2010 Biennial Report 

of the C.W. Bill Young Cell 

Transplantation Program 

(January 2008 – December 2009) 

U.S. Department of Health and Human Services 

Health Resources and Services Administration 

Healthcare Systems Bureau 

Division of Transplantation 

Issued December 2011
This publication was produced for the Health Resources and Services Administration, 

Healthcare Systems Bureau, Division of Transplantation, by the Medical College of Wisconsin’s 

Center for International Blood and Marrow Transplant Research under contract 

#HHSH234200637015C and the National Marrow Donor Program under contracts 

#HHSH234200637018C, HHSH234200637020C & HHSH234200637021C. 

Published December 2011
Table of Contents 

List of Abbreviations .................................................................................................................... 1

Section 1: Introduction ............................................................................................................... 1

1.0 Overview of the C.W. Bill Young Cell Transplantation Program ......................................... 1

1.1 History ............................................................................................................................... 1

1.2 Legislation and Components ............................................................................................. 1

1.3 Responsibilities .................................................................................................................. 2

1.4 Program contractors .......................................................................................................... 3

Section 2: Contract Components ............................................................................................... 4

2.0 C.W. Bill Young Cell Transplantation Program ................................................................... 4

2.1 Office of Patient Advocacy and Single Point of Access (OPA/SPA) ................................... 4

2.1.1 New mission/contract requirements ........................................................................... 4

2.1.2 Contacts with the Office of Patient Advocacy (statistics) ............................................ 5

2.1.3 Provide a Single Point of Access (SPA)....................................................................14

2.1.4 Patient Education Plan ..............................................................................................16

2.1.5 Professional Education Plan .....................................................................................16

2.1.6 Develop and Maintain a Website for the Program .....................................................18

2.2 Bone Marrow Coordinating Center ...................................................................................18

2.2.1 New Mission/Contract Requirements ........................................................................18

2.2.2 Demographic Data on the Donor Registry .................................................................19

2.2.3 Selection and Use of Adult Blood Cells .....................................................................21

2.2.4 Donor Recruitment ....................................................................................................24

2.2.5 Search Process Improvement ...................................................................................27

2.2.6 Other Projects ...........................................................................................................28

2.3 Cord Blood Coordinating Center ......................................................................................29

2.3.1 New Mission/Contract Requirements ........................................................................29

2.3.2 Growth of Cord Blood Unit Registry ..........................................................................29

2.3.3 Recruitment Programs through NMDP: Challenges to Recruitment ..........................31

2.3.4 Selection and Use of Cord Blood Units .....................................................................31

2.3.5 National Cord Blood Bank Inventory (NCBI) ..............................................................33

2.3.6 Developing Standardized Unit Inventory Requirements ............................................36

2.3.7 HLA-related Projects .................................................................................................36

2.3.8 Cord Blood Education for Physicians and the Public .................................................37

2.3.9 Quality Assurance Activities ......................................................................................37

2.3.10 Making Cord Blood Units Available for Research ....................................................38

2.3.11 Contingency Planning .............................................................................................38

2.3.12 Related Cord Blood Donor Program ........................................................................38

2.4 Stem Cell Therapeutic Outcomes Database ....................................................................38

2.4.1 Background and Purpose ..........................................................................................38

2.4.2 Responsibilities .........................................................................................................39

2.4.3 What is the Center for International Blood and Marrow Transplant Research 

(CIBMTR)? ........................................................................................................................39

2.4.4 What is Hematopoietic Stem Cell Transplantation (HCT)? ........................................40

2.4.5 What is Outcomes Analysis? .....................................................................................41

2.4.6 CIBMTR Data Collection ...........................................................................................42

2.4.7 Data quality ...............................................................................................................46

2.4.8 Data Shared with Others ...........................................................................................47

2.4.9 Transplant Center-specific Survival Rates .................................................................49

2.4.10 Quality of Life Studies .............................................................................................50
2.4.11 Other Therapeutic Applications ...............................................................................51

2.4.12 Research Repository ...............................................................................................51

Section 3: Appendices ...........................................................................................................53

List of Appendices .................................................................................................................53

Appendix A: Glossary of Terms ............................................................................................54

Appendix B: U.S. Centers reporting data to NMDP and CIBMTR .........................................57

Appendix C: Non-U.S. centers reporting data to NMDP and CIBMTR: ................................. 63

Appendix D: Related Web Links ...........................................................................................70

Appendix E: Map of Worldwide Transplant centers providing data to NMDP and CIBMTR ...71

Appendix F: CIBMTR Publications ........................................................................................72

2008 CIBMTR Publications ....................................................................................................72

2009 CIBMTR Publications ....................................................................................................76

Appendix G: CIBMTR Summary Slides ....................................................................................81

List of Tables 

Table 1. Office of Patient Advocacy contacts ............................................................................. 6

Table 2. How have you used the information from the NMDP's Office of Patient Advocacy? ..... 8

Table 3. What will you do because of this information from the NMDP’s OPA? .......................... 9

Table 4. Person filling out the OPA survey ................................................................................10

Table 5. What other information/services regarding transplant would be helpful? (Respondents 

were asked to check all that apply and could add other recommendations.) .............................10

Table 6. Would you recommend the Office of Patient Advocacy (OPA) to someone else in your 

situation? ..................................................................................................................................10

Table 8. Race/ethnicity of newly recruited donors, calendar years 2008-09. .............................24

Table 9. National Marrow Donor Program. Cord Shipments Using NCBI Funded Units by Patient 

Race For Calendar Years Ended December 31 ........................................................................35

Table 9. Distribution of transplants worldwide by disease available in the CIBMTR Research 

Database through 2009 (Data continue to accrue in this reporting period) ................................46

Table 10. Number of transplants worldwide for which data were submitted to CIBMTR by year 46

Table 12. Number of audits by year ..........................................................................................47

Table 13. Information requests fulfilled by year .........................................................................48

Table 13. Presentations given at professional meetings by year ...............................................49

Table 15. CIBMTR publications by source ................................................................................49

Table 16. Unrelated donor transplant research samples collected by calendar year .................51

Table 17. Related donor transplant research samples collected by calendar year ....................51
List of Abbreviations 

The following table lists the abbreviations and acronyms that appear in this document. 

ABBREVIATION DEFINITION

AABB (formerly known as American Association of Blood Banks)

ALL Acute Lymphoblastic Leukemia

AML Acute Myelogenous Leukemia

ASBMT American Society for Blood & Marrow Transplantation

BMCC Bone Marrow Coordinating Center

BMT Bone Marrow Transplant

CBCC Cord Blood Coordinating Center

CBU Cord Blood Unit

CIBMTR Center for International Blood and Marrow Transplant Research 

CLL Chronic Lymphocytic Leukemia

CML Chronic Myelocytic Leukemia

CPI Continuous Process Improvement

DLBCL Diffuse Large B-Cell Lymphoma

EBMT European Group for Blood & Marrow Transplantation

FACT Foundation for the Accreditation of Cellular Therapy

FDA Food and Drug Administration

FL Follicular Lymphoma

GVHD Graft-Versus-Host Disease 

HCT Hematopoietic Stem Cell Transplantation

HD Hodgkin Disease

HHS U.S. Department of Health and Human Services

HLA Human Leukocyte Antigen 

HRSA Health Resources and Services Administration

IBMTR International Bone Marrow Transplant Registry 

IRB Institutional Review Board

MCL Mantle Cell Lymphoma

MCW Medical College of Wisconsin

MDS Myelodysplastic Syndrome

MM Multiple Myeloma

NIH National Institutes of Health 

NMDP National Marrow Donor Program

OPA Office of Patient Advocacy

PBSC Peripheral Blood Stem Cells

QOL Quality of Life 

RITN Radiation Injury Treatment Network®

SCTOD Stem Cell Therapeutic Outcomes Database

SPA Single Point of Access

TED Transplant Essential Data
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

1 

Section 1: Introduction 

1.0 Overview of the C.W. Bill Young Cell Transplantation Program 

Every year, thousands of men, women and children are diagnosed with life-threatening 

diseases such as leukemia and lymphoma. Many of them will die unless they get a bone 

marrow, peripheral blood stem cell or cord blood transplant from a genetically matched donor. 

While some will find a donor within their family, most do not and need help to find an unrelated 

bone marrow, peripheral blood stem cell or cord blood donor. They also need their physicians to 

know and use the latest, most effective transplant practices. This knowledge comes from 

analyzing the outcomes of many transplants from centers around the world. All of these patients 

depend on the knowledge and services provided by the C.W. Bill Young Cell Transplantation 

Program. Additional general information about hematopoietic stem cell transplantation (HCT) 

can be found in section 2.4.4. 

This Biennial Report describes the activities of the C.W. Bill Young Transplantation Program 

and its predecessor, the National Bone Marrow Donor Registry, for the period January 2008 

through December 2009. It is an overview of the operation of this extensive network of medical 

organizations that provides patients and providers with the hematopoietic stem cells and 

information they need to combat life-threatening diseases. 

1.1 History 

In December 2005, the Stem Cell Therapeutic and Research Act of 2005 (Public Law 109-129) 

established the C.W. Bill Young Cell Transplantation Program (the Program). The Health 

Resources and Services Administration (HRSA) of the U.S. Department of Health and Human 

Services (HHS) is responsible for overseeing this Program. 

The C.W. Bill Young Cell Transplantation Program (the Program) is the successor to the 

National Bone Marrow Donor Registry (the Registry). The Registry was begun in 1987 through a 

grant from the U.S. Navy. In 1990, the Registry was formally established under HHS, with 

oversight initially by the National Heart, Lung, and Blood Institute (NHLBI), and since 1994 

under HRSA. The first transplant under the Registry’s auspices took place in 1987. While some 

of the activities of the Program are similar to those of the Registry, the Program has the added 

responsibility of collecting, analyzing and reporting on outcomes for all allogeneic transplants 

(those from a donor other than the patient him/herself) and on other therapeutic uses of blood 

stem cells. The Program was designed to help patients who need a transplant from an unrelated 

adult marrow or peripheral blood stem cell (PBSC) donor or cord blood unit (CBU) by: 

 Making information about bone marrow and cord blood transplantation available to 

patients, families, health care professionals and the public 

 Providing efficient, effective processes for identifying unrelated matched marrow and 

PBSC donors and cord blood units through one electronic system 

 Increasing the numbers of unrelated marrow donors and cord blood units that are 

available 

 Expanding research to improve patient transplant outcomes 

1.2 Legislation and Components 

The Stem Cell Therapeutic and Research Act of 2005 covers several components: 

 The C.W. Bill Young Cell Transplantation Program. The Program’s infrastructure is 

composed of: 

o The Office of Patient Advocacy and Single Point of Access (OPA/SPA), 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

2 

o The Bone Marrow Coordinating Center (BMCC), 

o The Cord Blood Coordinating Center (CBCC), and 

o The Stem Cell Therapeutic Outcomes Database (SCTOD). 

 The Program expands on what the National Bone Marrow Donor Registry was doing to 

increase the number of marrow donors and cord blood units. 

 The National Cord Blood Inventory (NCBI). NCBI umbilical cord blood banks will collect 

and store 150,000 new, high-quality umbilical cord blood units that will be made 

available to patients. The NCBI banks will also make some CBUs that do not meet the 

criteria for transplant available to researchers. 

 The Stem Cell Therapeutic and Research Act also authorized establishment of an 

Advisory Council on Blood Stem Cell Transplantation (Advisory Council). This council 

makes recommendations on issues about the Program to the Secretary of Health and 

Human Services and HRSA. 

Figure 1 shows how the Program is organized. 

Figure 1. Organizational Structure for the Program under the Stem Cell Therapeutic and Research Act of 2005 

1.3 Responsibilities 

The four Program components work together to: 

 Operate an electronic system for identifying, matching and facilitating the distribution of 

blood stem cells 

 Allow transplant physicians, health care professionals and patients to search 

electronically for available cord blood units and unrelated adult PBSC or marrow donors 

 Educate and reach out to the public to increase the numbers of volunteer adult PBSC, 

bone marrow and cord blood donations to ensure genetic diversity 

 Promote the availability of cord blood units as a transplant option 

 Analyze transplant trends and support research to help more transplant recipients live 

longer, healthier lives 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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1.4 Program Contractors 

The National Marrow Donor Program® (NMDP) operates three of the Program components: 

the Office of Patient Advocacy and Single Point of Access (OPA/SPA), the Bone Marrow 

Coordinating Center (BMCC) and the Cord Blood Coordinating Center (CBCC). 

NMDP is a nonprofit organization based in Minneapolis, Minnesota, which operated the National 

Bone Marrow Donor Registry under a series of contracts from the Federal Government. The 

NMDP is dedicated to creating opportunities for all patients to receive a bone marrow, PBSC or 

umbilical cord blood transplant from an unrelated donor when they need it. The Registry has 

grown to include more than eight million donors and more than 120,000 CBUs. It is the largest 

and most racially and ethnically diverse registry of its kind in the world. Medical advances are 

making marrow, peripheral blood and cord blood transplants available to more patients all the 

time. Since the first unrelated transplant was facilitated in 1987, NMDP has facilitated more than 

38,000 transplants. It now facilitates more than 4,800 transplants a year, analyzes the outcomes 

of the donation process for unrelated donors, and maintains a repository of donor-recipient 

blood samples for a large proportion of these transplants. 

The Center for International Blood and Marrow Transplant Research (CIBMTR) began as 

the International Bone Marrow Transplant Registry (IBMTR) at the Medical College of Wisconsin 

in 1972. By 2004, the IBMTR had grown to become a voluntary network of more than 400 

hematopoietic stem cell transplant (HCT) centers in 47 countries that shared data and 

conducted scientific studies to improve transplant outcomes. The physicians and scientists of 

IBMTR had generated more than 200 scientific peer-reviewed publications by 2004. At that 

time, the CIBMTR was created through an affiliation between IBMTR and the research arm of 

NMDP. 

The CIBMTR operates the fourth component of the Program: the Stem Cell Therapeutic 

Outcomes Database (SCTOD). CIBMTR analyzes the outcomes of all reported transplants, 

including since 2006, those transplants using unrelated donors facilitated by NMDP. The 

affiliation between IBMTR and NMDP-Research specified that the two organizations will conduct 

all of their HCT-related research activities together. This has led to coordinated data collection, 

management and analytic procedures. It takes advantage of the strengths of each of the two 

organizations to substantially enhance the resources that are available to the transplant 

community. 

The IBMTR brought a strong track record of statistical and clinical HCT expertise and an 

international network of data on autologous, related and unrelated donor transplants. NMDPResearch brought expertise in HLA1

 matching, bioinformatics, computer systems and repository 

maintenance. Integrating these operations allows more efficient data management, enhances 

electronic data collection capabilities and gives opportunities to link clinical data with biologic 

specimens. 

 

1 Human leukocyte antigen (HLA) typing is used to match patients and donors. HLAs are proteins—or markers—

found on most cells in your body. The immune system uses these markers to recognize which cells belong in your 

body and which do not. A close match between a patient’s and donor's HLA can reduce the risk that the patient’s 

immune cells will attack the donor cells or that the donor's immune cells will attack the patient’s body after the 

transplant. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Section 2: Contract Components 

2.0 C.W. Bill Young Cell Transplantation Program 

The four components of the C.W. Bill Young Cell Transplantation Program are: 

 Office of Patient Advocacy and Single Point of Access (OPA/SPA) 

 Bone Marrow Coordinating Center (BMCC) 

 Cord Blood Coordinating Center (CBCC) 

 Stem Cell Therapeutic Outcomes Database (SCTOD) 

2.1 Office of Patient Advocacy and Single Point of Access (OPA/SPA) 

Patients who are facing a life-threatening illness may need help in understanding their disease 

and their treatment options. When a patient needs a bone marrow, peripheral blood stem cell or 

cord blood transplant, the OPA can help the patients, their families and health care providers 

make sense of the options that are available. The C.W. Bill Young Cell Transplantation Program 

was created to help more patients have a successful HCT. As one of the four components of the 

C.W. Bill Young Cell Transplantation Program, the OPA/SPA provides help and support to 

patients and families. 

The OPA helps by providing case management services and information directly to the patient 

and their physician from the time of diagnosis through survivorship. OPA also increases access 

to transplants by reducing barriers and providing services that are linguistically and culturally 

sensitive. Having a Single Point of Access means that doctors, transplant center coordinators, 

patients and patient families can use one electronic system to search the Registry for unrelated 

marrow and peripheral blood stem cell donors as well as for CBUs. 

2.1.1 New Mission/Contract Requirements 

Since it was started in 1991, the NMDP’s OPA has supported patients, families and caregivers 

throughout the transplant journey. The field of transplantation continues to evolve as the number 

and diversity of patients who receive a transplant from an unrelated donor or CBU grows, the 

average age of patients continues to increase, and the number of transplant survivors in the 

United States grows. However, disparities exist for patients and families from some groups. 

Barriers and burdens prevent access to transplant and prevent some patients from receiving the 

best medical care, information and advocacy after their transplant. 

The services that are available for patients, families and health care professionals through the 

OPA/SPA include: 

 Culturally and linguistically sensitive information about diseases, treatment options and 

transplant centers. This information takes the form of: 

o Programs and tools such as Webcasts, teleconferences and online tools that reach a 

wider national audience 

o Educational resources in a variety of formats (e.g. patient teleconferences, audio and 

video, print, Web) 

 Individualized case management services to help patients deal with a variety of issues, 

locate resources and access educational information 

 Services to identify and resolve barriers for patients needing a transplant, including 

barriers associated with the financial coverage of costs to perform a donor search and to 

receive a transplant 

 Partnerships with other professional and patient advocacy organizations to expand 

public awareness 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

5 

 Preliminary search access for transplant centers, patients and physicians to look for 

unrelated bone marrow, peripheral blood or cord blood matches 

 Collaboration with the bone marrow and cord blood coordinating centers to provide a 

single point of access to transplant-related services: 

o Compiling search results received from the coordinating centers 

o Providing customized search assistance 

o Providing consultation about tissue type matching (HLA) as needed 

The OPA/SPA patient advocacy goals are to: 

 Provide a system to support individual patients and their efforts to identify and work with 

a transplant center 

 Provide technical assistance to help patients at transplant centers and to supplement 

patient advocacy services at transplant centers that have limited resources 

 Identify barriers to patients receiving a transplant, especially transplants from unrelated 

donors, and to provide assistance for overcoming them 

 Assist individuals in obtaining insurance support and other sources of financial aid 

 Assess the post-transplant needs of patients (as a group) and provide educational 

materials to help them understand and meet those needs 

 Provide support and information to caregivers of patients, and 

 Increase awareness of the services offered through the OPA 

Details about how the OPA and SPA are working toward meeting these goals follow. 

2.1.2 Patient advocacy services and case management 

2.1.2.1 Contacts with the Office of Patient Advocacy (Statistics) 

Information is tracked about how patients, families, health care professionals and other patient 

advocacy organizations are connected to the OPA, whether that is through patient services 

coordinators, search advocacy and patient assistance program contacts, customer satisfaction 

survey responses or requests for materials. Patient demographics, insurance denials, requests 

for financial assistance and changes in transplant volume for various age groups and diseases 

are also studied. The OPA uses this information to develop, evaluate and improve patient 

programs and services. Table 1 illustrates these OPA contacts throughout the transplant 

process for 2008-09. 

 Direct patient contacts are made in person, by phone, mail or e-mail. 

 Indirect patient contacts are through health care professionals or patient organizations 

and via visits (hits) to the MatchView® Web site page. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Table 1 describes the Office of Patient Advocacy contacts. 

NMDP Office of Patient Advocacy Contact 2008

Amount

2009

Amount

Physician preliminary search: Helping referring physicians not 

associated with an NMDP transplant center run a preliminary search for 

their patient

856 555

Performance of a non-network search (formerly called compassionate) 386 285

MatchView® Web hits (unique visitors to this page) 9,262 9,787

MatchView application button pressed (1,1522

) (5,098)

Preliminary search packets: A packet sent to all patients in the U.S. 

who have had a preliminary search for an unrelated donor performed 

on their behalf. It contains the following information: Step One booklet, 

Mapping the Maze (financial guide), letter from the OPA director, 

patient satisfaction survey and materials order form. 

7,829 8,417

Attendance at case manager telephone education workshop entitled An 

Introduction to Marrow & Cord Blood Transplant held quarterly, 

survivorship workshops held annually, and fundraising workshop (2009)

199 502

Requests for case management: Contacts with patients, family 

members, and others acting on behalf of patients (phone calls and 

emails)3

17,588 18,870

Educational material requests filled and sent to patients (and others) 1,690 1,406

Formal search packets: OPA sends a packet of information to patients 

involved in a formal search 

5,517 5,899

Office of Patient Advocacy Survey: mail surveys returned. These 

surveys are sent to those who contact OPA or sent to those who were 

contacted as part of the Outreach Program 

238 216

Patient Assistance Program (Search Assistance Funds): contact is 

through the transplant center coordinator or social worker who works 

directly with the patient/family to apply for financial assistance for 

search-related costs

720

grants

863

grants

Patient Assistance Program (Transplant Support Assistance): contact is 

through the transplant center coordinator or social worker who works 

directly with the patient/family to apply for modest financial assistance 

for post-transplant needs

3,124

grants

4,381

grants

Living Now Newsletter—Post-transplant educational newsletter sent to 

NMDP patients at 6 intervals after the transplant (3 months, 6 months, 

9 months, 12 months, 18 months and 2 years)

10,705 12,033

TOTALS 58,114 63,214

Table 1. Office of Patient Advocacy contacts 

 

2 A report to track online submission of the MatchView application was begun in October 2008. 

3 These numbers reflect contacts made as part of the Patient Services outreach program. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.1.2.2 Using MatchView® 

In May 2007, the NMDP launched a new Web-based resource for patients called MatchView, 

available at the NMDP website (http://www.marrow.org/). This allows patients to enter their HLA 

typing and view the number of potential matches (donors and CBUs) on the NMDP Registry. 

Patients can print a summary to use in discussions with their physician. The purpose of 

MatchView is to help patients and their oncologists or primary care physicians discuss unrelated 

donor transplantation and the appropriate next steps if a transplant is an option. This resource 

helps people interpret the results of their preliminary search for a matched donor, including 

information about whether donors and CBUs are available, and if they need to work with a 

transplant center to initiate a more comprehensive unrelated donor search. NMDP patient 

services coordinators and search advocates also help patients access MatchView by mail or 

fax, and will help them interpret the search reports by phone. Interpreter services are available 

for those who need assistance. 

Non-network searches. Some potential transplant recipients do not live close enough to an 

NMDP transplant center to use its services. If a patient must temporarily move to be near an 

NMDP transplant center, they may face financial barriers or not have a caregiver available. A 

patient may also live in a country that does not currently have an NMDP transplant center. The 

non-network search process helps non-NMDP transplant programs search the NMDP Registry 

and perform a transplant for their patients with an NMDP donor or CBU. Transplant programs 

that request non-network searches are pursuing membership with the NMDP, but have not been 

approved yet because the application is in process. 

2.1.2.3 Providing Transplant Information for Patients 

The OPA/SPA gives information and educational materials to patients and family members that 

are tailored to specific ages, cultures and languages. This includes information about the 

following topics: 

 Diseases that are treatable by a transplant 

 The search and transplant process 

 Patient-focused donor drives 

 Financial resources 

 Information about specific transplant centers 

 Post-transplant information and resources 

Patients can find these programs and services in a variety of ways, including through one-toone contact with an NMDP patient services coordinator, materials distributed to referring 

physicians and transplant centers, partnerships with other patient organizations, and through 

two Web sites http://www.marrow.org and http://bloodcell.transplant.hrsa.gov. 

2.1.2.4 Transplant center-specific survival data 

Survival data from specific transplant centers is available to patients, families and health care 

providers through the publication entitled Choosing a Transplant Center: a Patient’s Guide. This 

guide is published each year in print and online, and lists every NMDP transplant center in the 

United States. Contact information, the number and type of transplants the center performs (e.g. 

marrow, peripheral blood stem cells, cord blood, pediatric and/or adult), match criteria, 

estimated costs, and financial services for each center are all included in the guide. 

A description of each center looks at many factors that are known to influence transplant 

success, such as the age of the patient, their diagnosis, disease stage, general health, etc. The 

results that are shown in the Center-Specific Analysis section of the guide can be used to 

compare the performance of a particular center with other NMDP U.S. transplant centers. The 

results that are considered in each center’s performance are: 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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 The disease conditions of patients who receive a transplant at the center 

 The predicted one-year survival rate 

 The actual one-year survival rate of patients who receive a transplant 

The online version of the guide can be found at http://www.marrow.org/access. Current centerspecific survival data focuses on transplants with unrelated donors at U.S. centers. 

2.1.2.5 Surveys of Patient Satisfaction 

The OPA/SPA administers two surveys to patients who interact with NMDP: a Patient 

Satisfaction Survey and an Office of Patient Advocacy Survey. The information from these 

surveys is used to plan and develop future programs and services. It also helps OPA/SPA 

determine if they are meeting patients’ needs and find ways to improve their services. 

 The Patient Satisfaction Survey is mailed to all U.S. patients who have participated in a 

preliminary or formal search of the NMDP Registry. These patients are sent OPA/SPA’s 

education and information packets, which include the Patient Satisfaction Survey. 

 The Office of Patient Advocacy Survey is sent to anyone who has direct contact with a 

patient services coordinator and for whom a mailing address is available. 

The Patient Satisfaction Survey allows the OPA/SPA to learn whether individuals who have 

received a transplant information packet from NMDP are satisfied, and if the information and 

services the office has provided are meeting patient needs. A total of 22,896 surveys were 

mailed between January 2008 and December 2009. Of these, 2,464 were returned (10.8% 

response rate). Survey respondents are not given an incentive for returning the survey and 

surveys are sent only once to each individual. However, a study to examine the impact of 

incentive and follow-up was conducted from July 2009 to September 2009. Response rates 

significantly increased with both approaches. The experimental group had a 50.5% response 

rate compared to the control group, which had a 12.8% response rate (p<.05). 

Responses to a few of the Patient Satisfaction Survey’s most important questions are provided 

in the tables below. 

Table 2 shows the responses to the question: How have you used the information from the 

NMDP’s Office of Patient Advocacy? 

Survey Question: How have you used the information from the 

NMDP’s OPA?

2008

Responses

2009

Responses

It is my main source of information 216 (21%) 293 (22%)

I use this as well as other information 795 (75%) 980 (73%)

I do not use this information 43 (4%) 68 (5%)

Table 2. How have you used the information from the NMDP's Office of Patient Advocacy? 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Table 3 shows the responses to the question: What will you do because of this information from 

the NMDP’s OPA? 

Survey Question: What will you do because of this 

information from the NMDP’s OPA?

2008*

Responses

2009*

Responses

Use as reference 882 (83%) 1110 (82%)

Share with family 838 (78%) 1095 (81%)

Review with doctor 577 (54%) 698 (51%)

Visit http://www.marrow.org 559 (52%) 685 (50%)

Contact additional resources 331 (31%) 448 (33%)

Review with hospital staff 288 (27%) 355 (26%)

Contact OPA 256 (24%) 312 (23%)

Nothing further 16 (2%) 27 (2%)

Table 3. What will you do because of this information from the NMDP’s OPA? 

Figure 2 shows how patients use OPA materials. 

Figure 2. How patients use OPA materials. 

The Office of Patient Advocacy Survey is an important tool for the OPA to elicit feedback from 

patients, caregivers and others who use their case management services. A total of 1,870 

surveys were mailed between January 2008 and December 2009 to people who had direct 

contact with a patient services coordinator. Of these, 454 were returned (24% response rate), 

which includes 11 responses to the 77 Spanish surveys distributed (14% response rate). The 

tables below provide responses to selected questions taken from the survey. Table 4 gives a 

breakdown of whether the survey was filled out by the patient, relative/friend or other person. 

 

*

2008 number of responses = 1082; 2009 number of responses = 1382 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Question: Who completed the survey? 2008 Responses 2009 Responses

Patient 121 (54%) 128 (61%)

Relative or friend 104 (46%) 79 (38%)

Other 1 (<1%) 2 (1%)

Table 4. Person filling out the OPA survey 

Table 5 shows the responses regarding what other information might be helpful. The request 

with the highest response was for post-transplant information. A post-transplant annual 

teleconference and other initiatives are also being offered to meet this need. All of the survey 

information is presented to the NMDP’s Patient-Focused Initiatives Committee to help them plan 

future programs and services that OPA can offer to benefit patients. 

Question: What other information or services 

might be helpful?

2008* Responses 2009* Responses

Post-transplant information 104 (59%) 105 (64%)

Talking to another person 93 (53%) 81 (50%)

Age or disease-specific information 77 (44%) 87 (53%)

Information for caregivers 65 (37%) 46 (28%)

Support group 58 (33%) 56 (34%)

Teleconferences 22 (12%) 26 (16%)

Other 13 (7%) 13 (8%)

Table 5. What other information/services regarding transplant would be helpful? (Respondents were asked to 

check all that apply and could add other recommendations.) 

Table 6 shows the responses to the question: Would you recommend the OPA to someone 

else in your situation? 

Question: Would you recommend the OPA to 

someone else in your situation?

2008 Responses 2009 Responses

Yes 214 (94%) 200 (94%)

Maybe 8 (4%) 8 (4%)

Don’t know 4 (2%) 3 (1%)

No 2 (<1%) 1 (<1%)

Table 6. Would you recommend the Office of Patient Advocacy (OPA) to someone else in your situation? 

2.1.2.6 Patient Advocacy Efforts 

Following are the major undertakings of the OPA/SPA each year: 

1. Provide a system to support individual patients and their efforts to identify and work with a 

transplant center. 

The OPA/SPA provides a variety of individual advocacy services to patients, families, caregivers 

and health care professionals throughout the transplant process. This is a priority area, so the 

OPA/SPA offers the following services: 

 One-to-one telephone support to patients, families and health care professionals who 

contact the OPA. 

 Problem resolution for patients and their physicians searching for an unrelated donor or 

CBU.
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

11

 Guidance and modest financial assistance to patients and families in need, for donor 

searches and post-transplant costs. 

 Advocacy and telephone outreach for transplant families, to help them find additional 

resources (through the Patient Outreach Program). 

 Resource finding, such as locating fund-raising organizations, travel and lodging 

assistance, and other disease-specific organizations that can provide direct services to 

patients and their physicians. 

The number of individual contacts made in calendar year 2008-09 through these services is 

highlighted in Table 1 (above). 

2. Provide technical assistance to enhance patient advocacy programs at transplant centers 

and supplement advocacy services at transplant centers that have limited resources. 

The OPA/SPA develops new programs and improves existing programs to help patients 

throughout the transplant process. These programs provide services that are appropriate to 

different patient demographics such as age, language, culture, literacy and learning 

preferences. 

New programs and tools that have been created or are in development include: 

 Online clearinghouse. Throughout FY 2009, the OPA and nine partner organizations 

worked to develop an online information clearinghouse tool for transplant patients, 

caregivers and family members. The envisioned online “clearinghouse” will serve as the 

central place to manage transplant information and make it more available. The 

clearinghouse is intended to better serve transplant patients and their families 

throughout the treatment continuum by providing them targeted, relevant information; to 

help them learn what “they need to know now.” The launch of the clearinghouse is 

planned for early summer of 2010. 

 Words of Experience. Stories of Hope. This DVD, intended for adult patients and 

caregivers, focuses on various components of the transplant process within a hospital 

setting. It features interviews with patients, caregivers, physicians and other transplant 

center staff to help viewers understand what to anticipate during orientation to their 

transplant center, the preparative regimen, the actual transplant procedure, engraftment, 

and early recovery. Special features include information on such procedures as 

chemotherapy and radiation. The DVD can be viewed in English and Spanish. More than 

30 transplant center staff volunteered to serve as content reviewers throughout the 

development of this resource. 

3. Identify barriers to transplant, especially non-HLA-related (tissue type) obstacles, and 

provide assistance for overcoming them. 

The transplant process that patients and family members experience—from diagnosis through 

survivorship—may include barriers and burdens that limit their access to transplant services or 

impact its success. Each year, the OPA assesses the educational needs of the patients, 

families, and caregivers served by the Program. 

The NMDP’s Health Services Research (HSR) program was formally established in FY 2008. 

HSR is the multidisciplinary field of scientific investigation that studies how social factors, 

financing systems, organizational structures and processes, health technologies, and personal 

behaviors affect access to health care, the quality and cost of health care, and ultimately health 

and well-being (Academy Health, 2000). The HSR team engages in collaborative research with 

CIBMTR; consults with OPA staff concerning research designs and methodologies; evaluates 

OPA programs, services and materials; assesses patient satisfaction with OPA services and 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

12

materials; helps translate research into practice, seeks to optimize practice through research; 

and disseminates evaluation and research results. 

In April 2009, a new Payor Relations Manager was hired. This person focuses on building 

relationships with payor stakeholders, public and private, and developing tactical strategies for 

identifying and removing financial barriers facing patients. During the remaining months of FY 

2009, the majority of the Payor Relations Manager’s time was spent discussing major coverage 

and reimbursement policy concerns expressed by network transplant centers and patient 

families. 

4. Assist individuals in obtaining insurance support and other sources of financial aid. 

The OPA/SPA receives numerous calls each week from patients and families about their 

financial or insurance concerns, including requests for financial assistance. The OPA/SPA helps 

patients who: 

 Have no insurance and need information on insurance programs; 

 Are underinsured or lack adequate insurance coverage for donor search costs; 

 Have been denied coverage for a transplant by their insurer; or 

 Have financial barriers after their transplant, including difficulty paying insurance 

premiums, paying for drugs, or other non-medical post transplant costs associated with 

their care. 

One of the key services offered through the OPA/SPA is the Patient Assistance Program. The 

Patient Assistance Program provides financial grants to patients who need an unrelated marrow 

or cord blood transplant and are in need of assistance. This program offers a Search Assistance 

Fund and a Transplant Support Assistance Fund. 

The goal of the Search Assistance Fund is to increase access to transplants for patients who 

have inadequate insurance coverage. Fifty-eight percent of patients who received Search 

Assistance Funds in 2009 (57 percent in 2008) went on to have an NMDP-facilitated transplant. 

Patients and families often have significant increases in their expenses after a transplant, at the 

same time they are experiencing a reduction in income. On average, patients and families 

reported a 31 percent reduction in monthly household income at the time they apply for financial 

assistance. The Transplant Support Assistance Fund provides grants to patients or families who 

have expenses that are not covered by insurance during the period following their transplant. 

Eligible expenses include food, ground transportation, temporary lodging, prescriptions and 

clinic co-pays, and insurance premiums. 

In addition, OPA is a member of the Cancer Financial Assistance Coalition (C-FAC), which 

consists of 12 national financial and/or prescription assistance programs. This coalition, 

facilitated by CancerCare, came together in 2007 in order to: 

 Facilitate communication and collaboration among member organizations; 

 Educate patients and providers about existing resources and linking to other 

organizations that can disseminate information about the collective resources of the 

member organizations; and 

 Advocate on behalf of cancer patients who continue to bear financial burdens associated 

with the costs of cancer treatment and care. 

With the realization that each organization participating in the coalition offered lists of other 

financial resources to approach for help, in 2009 C-FAC developed a clearinghouse to provide a 

single, extensive listing of local and national financial resources to help patients and their 

families more easily access this information. This clearinghouse is available at: 

http://www.cancerfac.org. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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5. Assess and meet the post-transplant needs of patients. 

More patients live longer after a transplant than in the past, but many have ongoing health 

problems. After a transplant, patients and their caregivers can face many physical, financial and 

emotional challenges. Most transplant survivors have long-term effects or complications. These 

can include chronic and debilitating immune system disorders, fatigue, memory and 

concentration problems, infertility, and an increased risk of secondary cancers. The medical, 

financial and emotional costs of a transplant continue well into recovery and can burden patients 

and caregivers for years. 

Programs and resources that have been developed in 2008 and 2009 to respond to these posttransplant needs of patients include: 

 Emotional Health after Transplant for Survivors and Caregivers brochure. This 

brochure provides information for survivors on how to address emotional health issues 

after transplant, but its audience now includes both survivors and caregivers. It 

discusses the anticipated emotional responses to transplant for survivors and 

caregivers, methods to improve and maintain their emotional health throughout the 

transplant continuum, and questions to discuss with their physicians. The brochure also 

provides a list of national resources and support dedicated to addressing mental and 

emotional health needs throughout the transplant process. This brochure was developed 

with content support from CancerCare and The Wellness Community national offices. 

 Survivorship telephone education workshop. Based on feedback from posttransplant patients and evaluation results from a 2008 survivorship event, another 

survivorship telephone education workshop was developed and offered in FY 2009. The 

goal of this year’s program was to expand existing resources for patients who had a 

marrow or cord blood transplant and to provide information on a topic that survivors had 

indicated is of interest to them. The free telephone education workshop entitled Living 

Now: Your Post-Transplant Road Map was held in Sept. 2009. The primary speaker for 

this workshop was Willis H. Navarro, MD, Medical Director, Transplant Services, at the 

NMDP. Objectives included learning more about possible late effects; recommendations 

for prevention and monitoring for late effects of transplant; how to take an active role in 

post-transplant care; and survivorship resources. The majority of the 203 participants in 

this education program indicated they were marrow and cord blood transplant survivors. 

6. Provide ongoing support and information to caregivers of patients. 

Providing direct care for a recovering transplant patient is easily a full-time job, often involving a 

significant amount of psychological and emotional stress for the caregiver. It is not uncommon 

for a transplant caregiver to experience symptoms of depression and anxiety, even posttraumatic stress disorder, at numerous points throughout the transplant continuum4

. Because 

there is often more focus on the patient’s needs, the caregiver’s needs often go unaddressed. 

Several new programs and resources were developed in FY 2009 to focus on information for 

caregivers and health professionals who work with caregivers. They include: 

 A research pilot study was conducted through the OPA in conjunction with Michelle 

Bishop, PhD, University of Florida Department of Medicine, for caregivers of transplant 

recipients. The purpose of the study was to evaluate a caregiver self-care toolkit for 

 

4 Bishop, M., Beaumont, J.L., Hahn, E.A., Late Effects of Cancer and Hematopoietic Stem-Cell Transplantation on 

Spouses or Partners Compared with Survivors and Survivor-Matched Controls. Journal of Clinical Oncology. Vol. 

15, No. 11, Apr 10, 2007. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

14

content, feasibility, mode of administration (self-administered versus coach-facilitated) 

and effects of caregiver stress and coping. The University of Florida arm was selfdirected while the OPA arm of the pilot study utilized a coach-assisted model. 

 In order to respond to the unmet needs of the caregiver community, the OPA developed 

a special Living Now issue for caregivers. The primary goal of the caregiver issue is to 

provide transplant caregivers with an educational and directional resource to help them 

better care for themselves throughout the transplant continuum. Thus, this issue focused 

on supporting the caregiver’s needs – and not on what the caregiver needs to do to 

support their loved one. This special issue was completed in September 2009. 

7. Publicize the services offered by OPA/SPA. 

OPA/SPA participates in numerous national activities to increase awareness about its resources 

and services to various audiences, including patients, families and caregivers, health care 

professionals, and other patient-focused organizations. These activities allow the OPA to reach 

these other groups, identify collaborative opportunities and gain knowledge to use for new 

projects and resources. 

Some of OPA/SPA’s publicity activities include: 

 Conducting site visits to transplant centers. 

 Participating in national and local patient-advocacy, payor and financial, and 

professional association conferences and events as presenters, exhibitors and 

attendees. The primary objectives for participating are to increase awareness of marrow 

and cord blood transplantation; increase the visibility of OPA programs, services and 

materials; network with internal and external contacts; and identify new partnership 

opportunities. 

 Creating national teleconferences that provide greater access to transplant information 

for patients and families across the country. 

 Providing a comprehensive catalog of OPA/SPA resources. 

 Collecting stories from patients – sharing tips and advice with other patients, families 

and caregivers. 

2.1.3 Provide a Single Point of Access (SPA) 

As the point of access for physicians and patients to initiate searches of all registered adult 

donors and CBUs in the United States and internationally (through cooperative agreements with 

international registries), the NMDP provides an efficient search process through one electronic 

system. Doctors, transplant center coordinators as well as patients and their families can use 

this system to search the Registry. This process includes: 

 Allowing patients and doctors to explore the possibility of finding a donor or CBU using 

an easily accessed electronic interface 

 Worldwide searching for all sources of blood stem cells 

 Allowing doctors and transplant centers to reserve a CBU or initiate further testing of a 

potential volunteer donor 

 Providing updates of the search progress to patients, doctors and transplant centers 

2.1.3.1 Compile Search Results Received from Coordinating Centers 

NMDP consolidates search results from the Bone Marrow Coordinating Center (BMCC, Section 

2.2) and Cord Blood Coordinating Centers (CBCC, Section 2.3). It provides electronic search 

reports to transplant centers for donors and CBUs listed on its Registry through an Internet 

search program called TraxisTM. The program is used by transplant centers to manage and 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

15

track the entire search process and to access unrelated adult donors and CBUs worldwide, from 

initial search to transplantation. 

 HapLogicSM. In 2006, NMDP introduced an enhanced matching program that 

automatically identifies the donors or CBUs on the NMDP Registry with the highest 

potential to match a patient. This allows transplant physicians searching the Registry to 

identify more quickly and efficiently the best matched donor or CBU for their patients. 

The matching formula, referred to as HapLogicSM, is based on analyses of the tissue 

types (HLA) of millions of donors on the NMDP Registry. HapLogic uses advanced 

computer logic to predict the likelihood of finding matching donors or CBUs. In FY09, the 

NMDP initiated the planning process for the next enhancement of the HapLogic 

algorithm. This phase will work to establish HLA matching predictions for donors and 

CBUs that will utilize more extensive population genetics data and improve the donor 

sort to meet the clinical standard practice in transplantation. 

 Search services support. NMDP provides several services at no charge to transplant 

centers or patients to help them rapidly identify the best potential donor or CBU for 

further testing. NMDP staff with HLA matching expertise review preliminary search 

results and suggest search strategies for those patients with HLA types that are difficult 

to match. HLA consultations are available at any time in the search process. Consultants 

may be contacted at the request of transplant center staff or when an NMDP search 

coordinator identifies a problem with a search, such as too few donors or no sufficient 

matches among the donors already tested. NMDP also provides a centralized search 

management service for transplant centers that choose to request donor selection and 

monitoring services from NMDP. Transplant centers using this service have noted a 

decrease in search costs, reduction in search times, and increase in transplants. 

2.1.3.2 Monitor Progress of Searches and Follow Up on Dormant Searches 

The OPA, Search and Transplant Services, and Scientific Services staff members from NMDP 

work together to ensure that patients’ searches can lead to a transplant without delay. Staff 

members who are involved in the search monitoring process have expertise in the biology of 

HCT, the unrelated donor search process and in tissue (HLA) compatibility. Staff members from 

the various teams coordinate their efforts to eliminate barriers throughout the search process: 

 Patients with inadequate financial resources for search fees may receive patient 

assistance funds or help working with their insurer. 

 Searches with only a few potential donors are referred for an HLA consultation to identity 

the best donors available. The HLA consultant can offer insights into the patient’s HLA 

typing and the probability of finding a suitable donor or CBU for a transplant. 

 Patients searching via network transplant centers usually get search status updates from 

their transplant center coordinator. This gives the transplant center an opportunity to 

work with their patients on both search and non-search related issues (e.g. patient’s 

health status, housing for family members during the transplant, etc.). Transplant centers 

get instant updates on their patients’ searches through the TraxisTM software application. 

NMDP provides search status updates to patients through its OPA/SPA case 

management staff. 

2.1.3.3 Quality Control Plan 

NMDP has quality monitoring and control processes in place for many of its activities, including 

HLA typing laboratories, transplant center search management proficiency, computer searching 

enhancements, and blood stem cell collection and shipping. NMDP’s application testing process 

includes documentation, manual testing and automated testing. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

16

2.1.3.4 Protecting the Confidentiality of Donors and Patients 

NMDP complies with federal privacy laws to ensure that data and search reports protect the 

confidentiality of donors and patients. It maintains strict confidentiality policies through 

documented procedures, employee training, and published Donor and Patient Confidentiality 

Guidelines. All employees participating in human subject research studies have completed 

training in how to ensure patient privacy and safeguard the rights of research subjects with an 

online course through the Collaborative Institutional Training Initiative (CITI) program. 

2.1.4 Patient Education Plan 

It is a priority for the OPA/SPA to provide accurate and accessible educational resources for 

patients, families and health professionals on all aspects of the transplant process. This ensures 

that people who are considering or receiving a marrow, peripheral blood stem cell or cord blood 

transplant can make thoughtful, informed decisions. OPA gives special consideration to the 

varied learning styles and cultural needs of patients, families and care givers, especially those 

from medically underserved communities. Patients from special populations may experience 

greater challenges in accessing quality care and information about their disease. The OPA 

seeks to provide readily understood, medically accurate information for all individuals, in a 

variety of formats that respond to the broad range of learners’ abilities, needs and preferences. 

Each year, the OPA/SPA develops a plan that outlines the educational resources available 

through NMDP and OPA/SPA for patients, families and caregivers. The plan covers the four 

areas of the C.W. Bill Young Cell Transplantation Program: the BMCC, CBCC, SCTOD and the 

OPA/SPA. It also describes the OPA/SPA approach to evaluating the effectiveness of patient 

materials and resources. 

2.1.5 Professional Education Plan 

The NMDP, through the OPA/SPA, delivers significant and sustained professional medical 

education programs and resources to support physicians who refer patients for a transplant and 

who treat patients following transplantation. These educational programs focus on four key 

areas: refer, select, streamline and care. 

2.1.5.1 Refer 

Educate and enable referring physicians to refer appropriately. The referring physician 

plays a key role in positive outcomes for transplant patients. Data about outcomes clearly show 

the importance of the timing of the transplant. For most diseases, there is a survival advantage 

for patients transplanted earlier in their disease process. Research conducted by NMDP 

showed that referring physicians often do not have sufficient education about the role and timing 

of transplants5

. Those physicians with greater knowledge about transplant were more likely to 

recommend it to their patients. Referring physicians also showed a strong allegiance to their 

local transplant center’s expertise. In response to what was learned in this study, NMDP has 

developed and implemented an outreach program to educate referring physicians on three key 

messages: 1) transplant outcomes have improved, 2) appropriate timing of the referral improves 

outcomes, and 3) patient eligibility has expanded. 

The OPA/SPA provides education and resources to referring physicians in two ways: directly 

from NMDP and by supporting network transplant centers in their local educational activities 

with community physicians. NMDP provides both logistical support and educational materials 

that have been specifically developed to overcome barriers to referral. 

 

5 NMDP Market Research Findings 2006. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

17

Educational resources that are available include the Quick Reference Guidelines tool kit. This kit 

includes the referral guidelines, Recommended Timing for Referral Consultation and PostTransplant Guidelines, and a slide presentation that can be tailored to center-specific 

processes. National efforts in the past two years have included more promotion of the online 

resources, sponsoring numerous national Continuing Medical Education (CME) programs on 

the role and timing of transplantation. Currently seven online CME programs are available and 

additional programs are planned, to provide frequent updates on advances and recent 

outcomes data. 

NMDP has also partnered with an education provider to expand viewership, resulting in a 400% 

increase compared with previous methods. Newsletters, mailings that promote these resources 

and mailings that reinforce messages from the CME programs offer guidance and support to 

community physicians. Recent advances in cord blood transplantation, including better 

outcomes and better access to transplantation, have been important elements of these 

communications. In addition, NMDP has led a collaboration among several other transplant 

societies and organizations to raise awareness of the advances in transplantation. 

2.1.5.2 Select 

Lead the transplant field in understanding and applying the best practices in donor and 

cord blood selection. The OPA/SPA educates participants in the transplant field to: 1) improve 

the knowledge and application of best practices in donor/cord selection among network 

transplant center teams, 2) raise awareness and understanding of CIBMTR and NMDP 

research findings about donor selection, and 3) increase knowledge of advances in cord blood 

selection. 

In-person conferences and webinars on cord blood selection, best practices and on 

understanding HLA matching have received outstanding ratings. Participants said the 

information was helpful and could be applied to their clinical practices. The Advances in 

Transplantation electronic and print newsletter provides relevant and timely access to the most 

recent research and publications by summarizing important findings in this area. Subscriptions 

have grown dramatically and NMDP is looking to build its subscription base 

(http://www.marrow.org/Physicians/Medical_Education/Medical_Education.aspx). In addition, 

the newly redeveloped website for CIBMTR, http://www.cibmtr.org, provides improved access to 

relevant publications and research findings. 

2.1.5.2 Streamline 

Support transplant centers’ ability to streamline searches and help patients progress to their 

transplant efficiently and cost-effectively. Each year, the OPA/SPA develops and introduces 

new services and enhances its existing educational programs. To help network transplant 

centers understand how the organization can help their center, NMDP delivers instruction 

through in-person educational conferences, exhibit booths at conferences, focused group 

meetings and webinars. Following are some of the educational programs that have helped 

physicians and their teams adopt and use the key services and resources of the NMDP: 

 Custom Search Support, which provides expertise and logistic support for the donor and 

cord blood search process. 

 Referral Outreach, with provides support for transplant centers to educate local referring 

physicians to improve access. 

 HLA Nomenclature Education, which enables transplant centers and other clinicians to 

adapt their processes and systems to accommodate changes. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.1.5.3 Care 

Influence and enable referring and transplant physicians to provide the best in posttransplant care to their patients. NMDP research with referring physicians showed that 

referring physicians were uncomfortable with managing their patients’ post-transplant care. 

Some said they refer fewer patients for a transplant because of this issue. A lack of thorough 

post-transplant care leads to complications and poorer transplant outcomes, which reinforces a 

physician’s negative perceptions and limits future referrals. While NMDP cannot eliminate 

complications, it can increase physician knowledge of, and therefore comfort with, patient 

management. 

When patient and physician resources are coordinated, this helps ensure that both are better 

equipped to talk to each other about what care is needed and how to recognize early 

complications. In the past two years, NMDP developed the Quick Reference Guidelines for 

referral and post-transplant care, which can be found at http://www.marrow.org/md-guidelines, 

to teach physicians about transplant care for their patients. These resources have been 

promoted at large medical conferences such as the American Society of Hematology and the 

BMT Tandem Meetings. The NMDP online Physician Resource Center: 

http://www.marrow.org/Physicians also contains helpful information on post-transplant care, and 

provides ready access for physicians seeking to learn more. The Advances in Transplantation 

electronic e-newsletter also routinely communicates the latest advances in post-transplant care 

information to a growing list of subscribers. The Professional Education team also helped 

promote a patient version of the post-transplant care guidelines, which is now featured 

prominently on the CIBMTR Web site. 

2.1.6 Develop and Maintain a Website for the Program 

The Program’s Web site (http://www.bloodcell.transplant.hrsa.gov) is an official U.S. 

Government Web site managed by the Health Resources and Services Administration, U.S. 

Department of Health & Human Services. It was developed during the summer of 2007 for the 

C.W. Bill Young Cell Transplantation Program by representatives of the four Program areas and 

HRSA staff. The site has information for patients, health care providers, and other members of 

the public about the C.W. Bill Young Cell Transplantation Program, transplant resources, 

marrow and cord blood donation, and research and outcomes data. 

2.2 Bone Marrow Coordinating Center 

The Bone Marrow Coordinating Center (BMCC) is another of the components of the C.W. Bill 

Young Cell Transplantation Program that is administered by NMDP. 

2.2.1 New Mission/Contract Requirements 

The BMCC is charged with: 

 Recruiting more marrow donors, especially those of racially and ethnically diverse 

backgrounds. This includes making sure there are sufficient numbers of potential donors 

of specific races and ethnicities to meet the needs of patients who require a transplant. 

 Coordinating a network of national and international centers that work together to 

provide safe bone marrow transplants. NMDP maintains standards that govern donor 

recruitment, donor screening, collection, storage, processing, release, transportation, 

and administration of marrow, peripheral blood, and cord blood hematopoietic stem cells 

it facilitates. Staff members regularly monitor each center’s performance to make sure it 

complies with these standards. This includes an annual renewal process for all members 

of the network. The network is made up of: 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

19

o Donor centers and/or recruitment organizations for raising awareness, recruiting 

potential marrow donors, and managing donors throughout the donation process. 

o Cooperative registries (registries in other countries that have agreements with the 

BMCC) for identifying marrow donors and cord blood units outside of the United 

States. 

o Laboratories for identifying tissue types (HLA) and infectious diseases. 

o Tissue repositories for storing samples. 

o Collection centers (or hospitals) for bone marrow donation and apheresis centers for 

PBSC donations. 

o Transplant centers (hospitals with experienced transplant teams) for taking care of 

patients who receive a bone marrow, PBSC or cord blood transplant. 

 Providing an efficient system for collecting samples and identifying and matching tissue 

types through one electronic system (SPA). This includes: 

o Collecting and identifying the tissue types of donors and patients. 

o Maintaining a national registry so that a potential marrow donor who matches a 

patient’s tissue type can be found quickly. 

o Providing more extensive tissue typing and medical evaluations of potential marrow 

donors to protect donor and patient safety. 

 Collaborating with the OPA to provide educational information for patients, the public 

and medical professionals, and to help patients throughout the transplant process. This 

includes: 

o Allowing patients and physicians to electronically explore the possibility of finding a 

marrow donor or CBU. 

o Searching worldwide for all tissue sources through one electronic system. 

o Providing search progress updates to patients and health care professionals at 

transplant centers. 

 Ensuring data about transplant outcomes is collected and provided to researchers. This 

is meant to improve the availability, efficiency and safety of transplants from unrelated 

donors and to explore ways to reduce transplant associated costs. 

 Protecting patient and donor confidentiality throughout the search and transplant 

process, as well as when providing outcomes and research data. 

 Planning for public health emergencies requiring bone marrow transplants. 

2.2.2 Demographic Data on the Donor Registry 

NMDP’s Donor Registry has grown to include more than eight million registered volunteer 

donors and more than 100,000 cord blood units, which represents the largest and most racially 

and ethnically diverse registry of its kind in the world. 

Because tissue types are inherited, patients are more likely to match someone from their own 

race or ethnicity. Adding more donors and CBUs from diverse racial and ethnic backgrounds to 

the Registry increases the likelihood that all patients will find the match they need. Efforts are 

also targeted at recruiting younger donors, since they are healthier and have a longer time to be 

a qualified donor. 

The following charts show the distribution of the Registry by donor gender (Figure 3), age 

(Figure 4), and race or ethnicity (Figure 5) as of December 31, 2009. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

20

Figure 3. Distribution of NMDP donor registry by donor gender, as of 12/31/2009 

Figure 4. Distribution of NMDP donor registry by donor age, as of 12/31/2009 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

21

Figure 5. Distribution of NMDP donor registry by donor race/ethnicity, as of 12/31/2009 

2.2.3 Selection and Use of Adult Blood Cells 

Every year, thousands of men, women and children are diagnosed with life-threatening 

diseases such as leukemia and lymphoma. Many of them will die unless they get a bone 

marrow or cord blood transplant from a genetically matched donor. Some people find a match in 

their family, but 70 percent do not. These patients depend on the NMDP to help them find an 

unrelated PBSC, marrow or CBU donor. 

2.2.3.1 Total Number of Transplants for Calendar Years 2008-09

Since it began operations in 1987, NMDP has facilitated more than 38,000 marrow and cord 

blood transplants for patients who do not have matching donors in their families. On average, 

NMDP facilitates more than 400 transplants each month, with more than 4,800 marrow and cord 

blood transplants taking place in fiscal year 2009. 

Figure 6 shows the steady growth of transplants facilitated by NMDP and the distribution by 

donation type (graft): marrow, peripheral blood stem cell and cord blood. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

22

Figure 6. NMDP transplants and distribution by donation type, fiscal years 2007-2009. 

Using two cord blood units to increase the cell dose has become an increasingly important 

option for adult patients. In 2009, the NMDP facilitated more than 300 multicord transplants, 

more than twice as many as in 2007. 

2.2.3.2 Race and Age of Recipients 

Advances such as reduced-intensity preparation and conditioning prior to a transplant have 

made it a treatment option for more patients, particularly older patients. In 2009, 40 percent of 

NMDP facilitated transplants occurred in patients over the age of 50. The following charts show 

the distribution of transplants by patient race or ethnicity (Figures 7 and 9) as well as by patient 

age (Figures 8 and 10) during calendar years 2008 and 2009. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Figure 7. Race/ethnicity of NMDP transplant recipients in fiscal year 2008 

Figure 8. Age of NMDP transplant recipients in fiscal year 2008 

Figure 9. Race/ethnicity of NMDP transplant recipients in fiscal year 2009 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Figure 10. Age of NMDP transplant recipients in fiscal year 2009. 

2.2.4 Donor Recruitment 

On average, 48,000 new potential donors join NMDP’s Be The Match Registry each month. 

NMDP works with civic, community, corporate and faith-based organizations to recruit volunteer 

donors from diverse communities. Groups of individuals identified by NMDP for focused 

recruitment are: American Indian, Alaska Native, Asian/Native Hawaiian and other Pacific 

Islanders, Black or African-American, and Hispanic or Latinos. 

Table 7 shows the race/ethnicity of newly recruited donors. 

Ethnicity of Newly Recruited Donors 2008 2009

African-American 43,834 46,111 

Hispanic/Latino 55,701 77,150 

Asian/Pacific Islander 9,381 54,948 

American Indian/Alaska Native 2,774 3,206 

Multi Race 36,386 47,165 

Caucasian 202,659 252,509 

Total Recruitment 400,735 481,089 

Table 7. Race/ethnicity of newly recruited donors, calendar years 2008-09.

Forty-two percent—more than 245,000—of the potential donors who joined NMDP’s Be The 

Match Registry in 2009 were from diverse racial and ethnic communities. 

2.2.4.1 Donor Recruitment and Registry Diversification 

NMDP periodically performs an analysis of the size of the Registry, most recently in 2009, to 

determine the effect of their recruitment activities on successful donor matching for patients. 

Specific recommendations from this analysis were provided to HRSA. NMDP’s goal is to identify 

geographic regions where it is most likely to recruit subjects to balance the Registry with the 

HLA types that are needed. NMDP continues to improve its use of donor HLA data and 

population research so that patients can make best use of the Registry. 

2.2.4.2 Online Donor Registration 

Online donor registration, or “Do-It-Yourself” recruitment 

(http://www.marrow.org/JOIN/index.html), continues to evolve via enhancements in technology. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Through this online method, donors can join the registry by confirming they meet basic registry 

guidelines, completing the form, ordering the registration kit, following the instructions in the kit 

to collect a swab of cheek cells and returning the kit for HLA typing. Online social media will play 

a greater role in communicating with potential donors in the future. As communities evolve 

within the “virtual” environment, do-it-yourself donor registration will enable NMDP to target key 

audiences efficiently, educate them on its mission, and engage them in its lifesaving work. Much 

like what patient families, community groups, corporations and national partnerships are doing, 

NMDP will increasingly use Web-based recruitment services. 

2.2.4.3 Recruitment Performance Management System 

NMDP continually monitors its own efforts to recruit a diverse and committed group of donors on 

its Registry. One tool it uses is performance management programs, including the Tiered 

Recruitment Performance Management System. The intent of a performance management 

system is to identify areas of strength and opportunities for improvement in donor recruitment 

processes. The NMDP uses four measurements to evaluate its own performance and that of its 

recruitment partners: 

 Percent of Caucasian recruitment goal achieved 

 Percent of total minority goal achieved 

 Caucasian availability as measured by the Post Recruitment Survey 

 The availability of minority donors as measured by the Post Recruitment Survey 

The Post Recruitment Survey asks some recently-recruited NMDP donors to assess their 

understanding of the donation process, and their likelihood to participate if they were formally 

activated during a search in the future. It is a tool developed by NMDP in conjunction with 

vendor, Westat. Approximately 1,000 donors are interviewed by phone monthly 6-8 weeks 

following their recruitment onto the Registry. This survey seeks to assess donor knowledge, 

commitment and feedback regarding their experience with the recruitment process. Donor 

responses to a series of questions from the survey, pertaining to donor commitment to proceed 

if requested (e.g. availability), are compiled into a donor commitment score. This commitment 

score is factored at the individual recruiter and recruitment group level and is half the total 

weighting of the Tiered Recruitment Performance Management system. 

2.2.4.4 DNA-based HLA-A, HLA-B and HLA-DR Typing at Time of 

Recruitment 

Donors provide tissue samples at the time they join the Registry, a portion of which is used for 

immediate DNA-based HLA testing. The remainder is then stored at the NMDP Repository for 

future testing. Most donors provide four buccal (cheek) swabs, while a small percent provide a 

blood sample. Samples are shipped to testing laboratories to be evaluated for HLA-A, HLA-B, 

and HLA-DRB1. Approximately 30 percent of new donors are now also typed for HLA-C. 

HLA-C typing was begun because a recent study showed that it might be valuable to collect this 

information when the donor is recruited. That study showed that this information was likely to be 

needed, especially for minority marrow and PBSC donors. Transplant centers prefer to have this 

additional information available when evaluating adult blood stem cell donors for their patients. 

Given this finding, NMDP is adding HLA-C typing to its processing for approximately 34 percent 

of new donors, starting in late 2008. 

HLA typing results are reported to the NMDP within two weeks of the laboratory receiving the 

sample. All laboratories are certified for HLA testing, have strict internal quality control 

programs, and participate in the NMDP Quality Control Sample Testing Program. All samples 

are given Intermediate Resolution typing, and 38 percent are given higher resolution typing. 

Contracts to laboratories for HLA typing services are based on the following goals: 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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 Increasing the resolution of HLA typing 

 Receiving high-quality, accurate reports 

 Reporting results in 14-days or less 

 Decreasing the cost of HLA typing 

2.2.4.5 Volunteer Donor Retention 

Since the beginning of its operations, NMDP has contracted with scientists to support research 

on what motivates donors and how best to follow up on patient-directed donation requests. 

NMDP has used these research findings to: 

 Develop training programs for staff and volunteers from donor centers and recruitment 

organizations 

 Produce educational materials that provide donors with the information they want 

 Create opportunities for potential donors to make informed, committed decisions about 

joining the Registry 

NMDP also analyzes variables that may have an impact on donor availability. It then sends out 

monthly data to member centers to allow them to regularly assess their donor registration 

performance. 

NMDP’s ability to recruit donors that are willing to continue on to the stage of confirmatory tissue 

type testing (HLA typing) has declined across all broad race categories. In order for a donor to 

be considered “available” for this purpose, the donor must pass a health screening and consent 

to provide a blood sample for testing. Figure 11 shows donor availability by donor race for the 

years 2007, 2008 and 2009, where a slight decrease in availability has occurred. 

Figure 11. Available donors at the confirmatory typing stage, 2007-09.

To address this slightly declining trend in donor availability, NMDP proactively communicates 

with existing donors and conducts Registry data cleanup. NMDP communicates with its member 

organizations in order to: 1) maintain current member contact information for faster searches, 

and 2) strengthen member awareness, interest and commitment to the donor registry. This 

strategy also provides opportunities for members to volunteer and stay engaged with the 

Registry. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.2.5 Search Process Improvement 

2.2.5.1 Donor Management Performance System 

NMDP strives to improve its performance at every step of the search and donation process. The 

NMDP Donor Management Performance system (similar to the recruitment management 

performance system) was designed to improve the organization’s capabilities, by evaluating the 

donor management process as part of an integrated model of timeliness, availability and 

excellent customer service. This system defines clear performance expectations, and rewards 

donor centers when their performance meets and exceeds goals. 

The NMDP uses five measures to evaluate how well donor centers are doing: 

 Sample collection timelines 

 Caucasian donor availability 

 Minority donor availability 

 Donor clearance timelines 

 Donor satisfaction customer service score 

Donor clearance timelines are measured from the day the donor is contacted and requested to 

have typing done as a potential donor, until the day they receive final approval to become a 

donor. This process includes an information session and medical evaluation of the prospective 

donor. 

The donor satisfaction customer service score comes from a post donation satisfaction survey 

distributed to donors the month after their donation. Its purpose is to find out how satisfied 

donors are with their experience and to identify areas where the process can be improved. 

Service access, service quality and the donor’s experience with program staff are all evaluated. 

2.2.5.2 Analysis of Search Completion 

NMDP routinely analyzes the timelines and outcomes for the donor search process. An 

evaluation of donor searches done between May 2006 and June 2007 revealed some important 

information. It showed that certain racial/ethnic groups were more likely to continue in the 

process from preliminary search to formal search and from formal search to transplant within six 

months. Caucasian, Hispanic and Asian/Pacific Islander recipients continued to the formal 

search phase more often than Black/African-American recipients did. Hispanic patients, followed 

by Caucasian patients, were most likely to proceed from the formal search stage to the 

transplant. 

Older recipients had much better percentages advancing to the formal search stage, but were 

less likely to receive a transplant than younger patients. Comparison of data between 2005 and 

2007 showed an encouraging trend: more patients progressed from the formal search stage to a 

transplant, although this improvement was not statistically significant. The analysis also showed 

a trend toward shorter times for the search stage to progress from the preliminary and formal 

search stages to a transplant. 

It also showed that many (42 percent) of the cord blood units that were ordered had previously 

been confirmatory typed, and were available for immediate shipment. This demonstrates the 

benefits of having a centralized cord typing laboratory and confirming CBU typing ahead of time. 

NMDP will continue to evaluate and analyze these important aspects of the search process. 

2.2.5.3 Customized HLA Typing 

NMDP launched a Customized HLA Typing service in August 2002. This was created in 

response to requests from transplant centers for more flexibility in the search process. It allows 

transplant centers to request tailored, or specific HLA typing, from the NMDP laboratories. The 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Customized HLA Typing service was designed to reduce search times and increase flexibility. 

Transplant centers using this service can select particular factors that they would like to hone in 

on to match a particular patient’s HLA (tissue) type. Figure 12 shows the number of customized 

searches by fiscal year. 

Figure 12. Customized donor data searches, fiscal years 2007-09

2.2.6 Other Projects 

2.2.6.1 Quality Assurance Efforts to Safeguard Donors and Patients 

Protecting the health, confidentiality and good will of donors and patients is critical to NMDP’s 

mission and purpose. NMDP continually works to improve the recovery monitoring process for 

any donor that is experiencing post-donation complications. The goal is to ensure that donors 

receive adequate support, including medical care or disability coverage, until they recover. 

Serious and unexpected adverse events are reported to HRSA. Since PBSCs and CBUs are 

collected as part of an Investigational New Drug study with the Food and Drug Administration 

(FDA), serious and unexpected adverse events related to these donations and transplants are 

also reported to the FDA. 

2.2.6.2 Contingency Planning 

The NMDP Emergency Preparedness program is responsible for organizational emergency 

preparedness, business continuity, Coordinating Center security and organizational emergency 

communications. This function was formally established in June 2005 to support NMDP’s efforts 

to plan for public health emergencies that might require bone marrow transplants. 

NMDP also collaborates with the American Society for Blood and Marrow Transplantation 

(ASBMT) to coordinate the Radiation Injury Treatment Network® (RITN). It is made up of 56 

NMDP centers (transplant centers, donor centers and cord blood banks) that receive ongoing 

training for a mass casualty marrow-toxic incident (such as exposure to ionizing radiation or 

mustard gas). RITN, in collaboration with other experts at the U.S. Department of Health and 

Human Services, provides for comprehensive evaluation and treatment for victims of radiation 

exposure or other marrow-toxic injuries. They are developing treatment guidelines, educating 

health care professionals, working to expand the network and coordinating appropriate disaster 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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specific responses. These materials are available to health care professionals on CD-ROM and 

a Web site (http://www.ritn.net/).

2.3 Cord Blood Coordinating Center 

The Cord Blood Coordinating Center (CBCC) was established as one of the four components of 

the C.W. Bill Young Cell Transplantation Program to help more patients receive a successful 

umbilical cord blood transplant. It is administered by NMDP. 

2.3.1 New Mission/Contract Requirements 

Umbilical cord blood (cord blood) is recognized as an established alternative to bone marrow 

and peripheral blood stem cells as a transplant source for many of the same diseases. Cord 

blood units (CBUs) are used more often for pediatric recipients, but are also used increasingly in 

adults. The relative ease of CBU collection, along with less stringent HLA matching 

requirements, makes cord blood more accessible for patients from racial and ethnic minority 

populations and for those with rare HLA types. 

The CBCC was established to: 

 Increase access to transplantation by providing a comprehensive registry of CBUs; 

 Facilitate the search and distribution of CBUs on the Registry; 

 Support efforts to educate health professionals and the public about CBU 

transplantation, and reduce barriers to this therapy; and 

 Manage the related cord blood donor program for families that are having a baby, and 

who have a first-degree (close) relative diagnosed with a disease that may be treated by 

a cord blood transplant. 

The CBCC coordinates a national registry of CBUs through agreements with transplant centers, 

cord blood banks, international registries and laboratories. It also works closely with the other 

Program operators to coordinate and serve patients in need of a transplant. 

2.3.2 Growth of Cord Blood Unit Registry 

The NMDP has operated a registry of cord blood banks since 2000. Over time, there has been a 

steady increase in the number of CBUs available for transplantation (Figure 13). NMDP and 

HRSA sponsor programs to encourage cord blood banks to collect and process more CBUs 

from families of diverse ethnic and racial backgrounds (Figure 14). 
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Figure 13. Cord blood units on the Registry - Calendar Years 2007 – 2009 

Figure 14. Race/ethnicity of cord blood units on the Registry as of 12/31/09 

Note: Caucasian includes patients who chose a broad race of Caucasian, Declined, Other or Unknown without 

Hispanic ethnicity. Hispanic includes patients who chose a broad race of Hispanic or Caucasian, Declined, Other or 

Unknown with Hispanic ethnicity. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.3.3 Recruitment Programs through NMDP: Challenges to 

Recruitment 

Although the number of cord blood donors has increased significantly since 2000, there are 

several factors that make recruiting them and storing the CBUs for clinical use challenging. 

The first is expense: although there is no cost to families for donating cord blood to a public cord 

blood bank, there is considerable cost for collecting, processing and storing the CBUs. The total 

costs average $1,500-$2,000 per unit. 

The second challenge to the use of CBUs is that they must be processed within 48-hours of 

collection. These two factors mean that many cord blood banks focus on efficiency by recruiting 

new mothers who deliver in hospitals with large, active obstetrics programs that are physically 

close to their facility. However, the majority of pregnant women do not give birth at a hospital 

associated with a public cord blood bank. In some cases, it is possible for women to receive a 

collection kit through the mail, have their physician perform the collection and return the CBU to 

the cord blood bank. NMDP is currently conducting a pilot program for non-fixed site collections 

with three cord banks. The results of the pilot will be evaluated to determine the feasibility of 

expanding the program network-wide. 

Funding that is available through the NCBI program (see 2.3.5 below) is helping increase the 

national inventory of CBUs. Between 2007 and 2009, HRSA provided funds to cord blood banks 

to help build their inventories of high quality CBUs. This funding has enabled the addition of 

over 9,400 CBUs during this reporting period, of which about half were from ethnic and racial 

minority donors. 

2.3.4 Selection and Use of Cord Blood Units 

Every search of the NMDP Registry on behalf of a patient identifies potentially matched cord 

blood units and unrelated PBSC and bone marrow donors. When a patient needs a transplant 

for a life-threatening disease, his or her doctor considers many factors: 

 Should the cells come from the patient (autologous transplant) or from a donor 

(allogeneic transplant)? The type of transplant to be used depends on which works best 

for that disease. 

 Which graft source (bone marrow, peripheral blood or cord blood) is best for the patient? 

Each source has advantages and disadvantages. 

Cord blood is especially useful for: 

 Patients who need a transplant quickly, because CBUs are stored frozen and ready to 

use. 

 Patients who have a hard time finding a matched bone marrow or PBSC donor. Cord 

blood does not have to match a patient's HLA type as closely as donated bone marrow 

or peripheral blood stem cells. 

The use of cord blood for transplantation has been steadily growing. Approximately 22 percent 

of transplants facilitated by the NMDP in fiscal year 2009 used cord blood (Figure 6). 

2.3.4.1 Race and Age of Cord Blood Transplant Recipients 

The use of cord blood in transplants has increased for both children and adults. Cord blood is 

used more often in children because the umbilical cord and placenta hold a limited amount of 

blood and blood-forming cells. The number of blood-forming cells that a transplant recipient 

needs is relative to their size—smaller patients need fewer cells and larger patients need more 

cells. Some CBUs may not have enough blood-forming cells for larger patients (Figure 15). 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Figure 15. Age distribution of cord blood recipients, calendar year 2009 

For a successful transplant, the tissue type of a bone marrow, PBSC donor or a CBU should 

match the patient's as closely as possible. Tissue types are inherited, so patients are more likely 

to match the HLA type of someone who shares their racial or ethnic heritage. Often, patients 

from racially or ethnically diverse communities have a harder time finding a match. Because 

cord blood does not need to match a patient as closely as donated bone marrow does, cord 

blood transplants may offer hope to these patients. In 2009, 33 percent of cord blood 

transplants were for patients from racially or ethnically diverse communities (Figure 16). 

Figure 16. Race/ethnicity distribution of cord blood recipients, calendar year 2009 

2.3.4.2 Increasing Transplants for Adults 

Researchers are trying different ways to increase the number of cells in a CBU so they can use 

cord blood for larger patients. One method being studied is a way to increase the number of 

cells in a CBU in a laboratory before giving the unit to a patient. Another method being 

investigated is the use of two (or more) CBUs for a single patient. The use of dual CBUs for 

single recipients has increased in recent years (Figure 17). 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Figure 17. Single and multi-cord transplants, calendar year 2007-09

2.3.4.3 International Exchange of Cord Blood Units 

Finding the best CBU for a patient often means getting it from an international cord blood bank 

or registry. Almost 45 percent of CBUs used for transplants come from a country other than the 

country of the patient receiving the unit. 

In fiscal year 2009, 233 CBUs used in transplants for U.S. patients facilitated by the NMDP were 

imported from other countries. Similarly, 272 CBUs were exported from the United States for 

patients in another country. This international cooperation is critical to providing the best options 

for patients who need transplants. 

2.3.5 National Cord Blood Bank Inventory (NCBI) 

The NCBI portion of the Stem Cell Therapeutic and Research Act of 2005 provides funds for 

collecting and storing 150,000 new units of high-quality cord blood. These CBUs are made 

available through the C.W. Bill Young Cell Transplantation Program to treat patients who need a 

transplant. 

Cord blood banks that receive contracts to help build the inventory of CBUs will: 

 Encourage more cord blood donations, with special emphasis on parents of racially or 

ethnically diverse backgrounds. 

 Collect and store CBUs and make them available through the Program. 

 Ensure the CBUs are of high quality and that they meet certain standards, such as 

having enough blood-forming cells. Cord blood units that do not meet these criteria may 

be made available for research studies intended to improve patient transplant outcomes. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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 Protect the rights of donating mothers and their babies by obtaining informed consent 

from the mother to donate and by maintaining confidentiality of the mother and baby. 

 Provide CBU data to the SCTOD contractor. 

2.3.5.1 NCBI Participating Cord Blood Banks 

Starting in late 2006, HRSA began entering into contracts with cord blood banks to participate in 

the NCBI program. These contracts are awarded through a competitive process. As of the end 

of fiscal year 2009, 12 banks had received contracts. They are: 

 Carolinas Cord Blood Bank 

 M.D. Anderson Cord Blood Bank 

 New York Blood Center National Cord Blood Program 

 Puget Sound Blood Center 

 St. Louis Cord Blood Bank 

 StemCyte International Cord Blood Center 

 Texas Cord Blood Bank 

 University of Colorado Cord Blood Bank 

 LifeCord 

 CORD:USE 

 New Jersey Cord Blood Bank 

 Cleveland Cord Blood Center 

HRSA and each of the NCBI banks contract for specific recruitment goals. To better meet the 

needs of all patients, there is a heavy emphasis on recruiting donors of diverse ethnic and racial 

backgrounds. 

2.3.5.2 Number of NCBI Units Used for Transplant 

Before cord blood banks are permitted to start collecting CBUs under their NCBI contract, they 

need to make changes to their consent forms and sometimes other changes to their operations. 

After a slow start because of these requirements, NCBI recruitment is steadily increasing. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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As of 12/31/2009, approximately 30,000 NCBI units have been added to the registry, of which 

633 have been shipped for transplantation, as shown in Table 8 and Figure 18. 

Patient Race 2007 2008 2009 Total to Date

AFA 3 16 47 66

API 1 7 19 27

CAU 7 72 222 301

DEC 0 0 6 6

HAW 0 0 0 0

HIS 0 0 0 0

NAM 0 1 4 5

OTH 0 0 1 1

UNK 2 63 162 227

Total 13 159 461 633

Minority*4 24 70 98

HIS Ethnicity** 2 18 89 109

Total Minority/Ethnicity 6 42 159 207

Table 8. National Marrow Donor Program. Cord Shipments Using NCBI Funded Units by Patient Race For 

Calendar Years Ended December 31

Figure 18. Race/ethnicity distribution of NCBI cord blood units, calendar year 2009

 

* * Minority includes the broad races of AFA, API, HAW, HIS, and NAM. 

** ** HIS Ethnicity includes only patients who chose a racial group of CAU, OTH, DEC, or UNK and an ethnic group of 

HIS. HIS Ethnicity is updated on a quarterly basis so the data for prior months may change. Broad race does not 

change. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.3.6 Developing Standardized Unit Inventory Requirements 

The NCBI banks and NMDP have been working together since 2000 to identify and adopt 

practices to improve the quality of stored CBUs. Together, they have established standards for: 

 Testing for infectious diseases 

 The minimum number of cells in new units for the supplier to be eligible for 

reimbursement. (This recognizes the fact that larger units are more likely to be chosen 

and useful for more patients.) 

 The level of HLA typing that is needed to provide the best information to patients and 

their physicians for their search reports 

 Screening questions that should be asked of mothers and what should be included in the 

baby’s family medical history 

Much of the information obtained through these criteria is available in the NMDP database to 

make selection of units for patients easier and faster. 

2.3.7 HLA-related Projects 

It is important that high-quality, timely tissue-typing information is available to patients and their 

physicians, so that suitable CBUs can be identified. NMDP offers several programs to improve 

information about available CBUs to physicians. 

2.3.7.1 Use of a Central Confirmatory Typing Laboratory 

One of the challenges for cord blood banks and transplant centers is that a limited number of 

samples are available for additional testing. Since CBUs are small, the cord banks need to save 

as many of the cells as possible in the CBU itself. To make best use of the samples and the 

information that additional testing might provide, NMDP has a contract with one central 

laboratory to do additional and confirmatory testing on CBU samples. The advantages of this 

process are: 

 A rigorous quality control program is maintained. Results are reported each quarter. The 

central laboratory has a more than 99 percent accuracy rate for typing. 

 The central laboratory keeps a small number of extra cells for potential future use. 

 Typing results are available electronically through the SPA search (see Section 2.1.3). 

Once this confirmatory typing is done, it does not have to be performed again and the 

unit can be ordered quickly, if needed. 

2.3.7.2 Prospective Cord Blood Unit Typing 

Many patients who receive transplants have aggressive diseases. They may be medically 

unstable, which means that they must receive a transplant very quickly. By prospectively 

performing the second (confirmatory) level of tissue typing before the unit is actually requested 

on behalf of a specific patient, it becomes available immediately. More than 21,000 CBUs in the 

Registry are already confirmatory typed, making them more quickly available when needed. 

2.3.7.3 Search Process Improvements 

Continuing to improve processes or operations is an important goal for the CBCC and NMDP as 

a whole. Several projects have helped streamline operations: 

 Multi-cord tool. When a transplant center is searching for two CBUs for a single 

recipient, each unit must match the patient and the other CBU. NMDP developed an 

electronic tool to compare the match between units and the recipient to make it easier to 

identify and order CBUs. 

 Online cord blood unit eligibility assessment. The FDA has established requirements 

for determining “eligibility status” of CBUs. They are based on the results of maternal 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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donor screening, medical history and infectious disease marker test results. The CORD 

Link Web® software that NMDP developed and provides free to cord blood banks 

includes an automated assessment of this eligibility status. This application also 

generates the form that accompanies the unit when it is shipped. 

 Providing additional shippers to banks. The increase in number of cord blood 

transplants has resulted in an increased need for the special shipping containers used to 

transport CBUs from the bank to the transplant center. NMDP has provided more than 

80 “dry shippers” to network cord blood banks to better meet this need. 

2.3.8 Cord Blood Education for Physicians and the Public 

Professional medical education programs help physicians learn about appropriate timing and 

referring of patients for consultation and treatment; best practices for donor and cord blood 

selection; streamlining the search process; and providing post-transplant care when patients 

return home. Further information about professional education is contained in Section 2.1.5. 

Cord blood recruitment education plan: NMDP works with network cord blood banks to help 

them achieve their recruitment goals. NMDP supports awareness and education programs for 

expectant parents and others to increase the number of cord blood donors, including: 

 Expectant parents and public/media: NMDP has asked potential cord blood donors to 

identify what might be barriers and what might make them willing to donate. Based on 

that information, NMDP worked with cord blood banks to develop recruitment and 

educational materials. NMDP’s online resource center (http://www.bethematch.org/cord) 

helps educate expectant parents about their options for cord blood storage and helps 

them understand public cord blood donation. NMDP has also worked closely with the 

media to help disseminate accurate information to the public about cord blood. 

 OB/GYN and labor/delivery staff: Discussions with cord blood recruitment staff, 

obstetricians and labor/delivery staff have indicated that these individuals need more 

education before they will support public umbilical cord donation. They need to be 

motivated before they will become involved. This process involves additional efforts on 

their part to educate their patients and support collection. Obstetricians and 

labor/delivery staff also need education to help ensure that they collect the CBUs 

correctly. An instructional DVD on correct collection techniques has been developed. An 

extensive market research study with expectant parents to learn about their current 

levels of understanding of and attitudes toward public cord blood donation has been 

completed. 

2.3.9 Quality Assurance Activities 

NMDP staff review data across the network of cord blood banks and transplant centers to 

identify areas of concern. These concerns might not be apparent if the information were 

collected at only one center. This review helps the network improve its collection, storage and 

search processes so that patients are receiving the highest quality transplant possible. NMDP 

has provided financial assistance to help cord blood banks receive and maintain accreditation 

by AABB (formerly American Association of Blood Banks) and/or the Foundation for the 

Accreditation of Cellular Therapy (FACT). 

 Incident reporting, investigation and trending. NMDP receives reports from cord blood 

banks and transplant centers if an unusual or unexpected event takes place. These 

include difficulties with the thaw procedure or a reaction to the infusion of a CBU. These 

reports are investigated and monitored. Depending upon the severity of the incident, 

NMDP may notify HRSA and the FDA. NMDP reviews the reported incidents quarterly, 

and looks for trends in the data to identify patterns that may require changes to practice. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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This regular review is done to ensure that quality improvements continue throughout the 

network. 

 Proficiency program. The NMDP has formed a partnership with StemCell Technologies 

(Vancouver, BC) to develop the first cord blood proficiency program. This program 

provides participants the opportunity to assess their individual competency in testing for 

nucleated cells, colony forming units, viability and CD34+ cells. It is available to all U.S. 

cord blood banks. 

2.3.10 Making Cord Blood Units Available for Research 

Individual cord blood banks make CBUs available for research studies to investigate how to 

improve outcomes for transplant patients. Cord blood banks providing these CBUs for research 

have different requirements about their use for studies. Most cord banks will ship CBUs to 

transplant facilities anywhere within the United States. NMDP provides an annual report to 

HRSA about the number of units provided for research by network cord blood banks. 

2.3.11 Contingency Planning 

Network cord blood banks also participate in activities related to the NMDP emergency 

response process. An Emergency Response Plan has been developed to help cord blood banks 

respond appropriately in the event of an emergency that might be marrow toxic, either natural or 

man-made. Drills and staff training are given regularly to assure that operations continue and 

patients are able to receive the transplants they need. 

2.3.12 Related Cord Blood Donor Program 

The Stem Cell Therapeutic and Research Act of 2005 called for establishing a three-year pilot 

program for banking CBUs from related donors. It was designed to help families in which a 

biological sibling or parent has been diagnosed with a medical condition that might be improved 

by a cord blood transplant. When a baby is born to an eligible family, there is no charge to the 

family to have that baby’s umbilical cord blood collected and stored. It is estimated that as many 

as 2,500-5,000 families per year might benefit from this program. 

The Related Donor Cord Blood Program launched on October 1, 2008, with the NMDP OPA 

serving as the central clearinghouse for information about the Related Donor Cord Blood 

Program to the public and professional organizations. HRSA is overseeing this process. In 

January 2010, a new version of the CORD Link Web application was successfully released, 

which included enhancements to accommodate the registration of cord blood units collected 

and banked for the purpose of related donor transplantation. 

2.4 Stem Cell Therapeutic Outcomes Database 

The Stem Cell Therapeutic Outcomes Database (SCTOD) is the fourth component of the C.W. 

Bill Young Cell Transplantation Program. It is administered by the Center for International Blood 

and Marrow Transplant Research (CIBMTR) at the Medical College of Wisconsin. The goal of 

the SCTOD is to collect, store and analyze data about bone marrow, peripheral blood stem cells 

(PBSC) and cord blood transplants and provide information for research to help improve 

outcomes for patients. 

2.4.1 Background and Purpose 

The purpose of the SCTOD is to collect data on all allogeneic (related and unrelated donor) 

hematopoietic stem cell transplants (HCTs) done in the United States to advance the field. It 

also collects information on all HCTs done with products received through the C.W. Bill Young 

Cell Transplantation Program but performed outside the United States. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

39

Another part of the SCTOD contract with HRSA requires establishing a related donor-recipient 

sample repository in addition to the existing repository for unrelated donor-recipient samples. 

This new feature was launched in December 2007 along with the FormsNetTM 2.0 electronic 

data collection system. 

2.4.2 Responsibilities 

In its role as SCTOD contractor, CIBMTR: 

 Provides an electronic database of scientific information about outcomes of allogeneic 

bone marrow, PBSC and cord blood transplants, to be used by researchers and health 

care professionals. 

 Establishes a quality control program for the database functions including: 

o Quality assurance of data 

o Performance monitoring 

o Training and assistance to data contributors 

 Collects and analyzes information about: 

o Medical diagnoses for which transplant may be a treatment option 

o Transplant preparation and procedures 

o Patient outcomes 

o Patients' quality of life 

o New uses for cells found in bone marrow, peripheral blood, and umbilical cord blood 

 Works with transplant centers to reduce the burden of data reporting. 

 Reports information about: 

o The need for donors and CBUs to policymakers, based on data from the Program. 

o Cost-benefit analyses of the size, composition and growth rate of the NCBI and Adult 

Donor Registry, in order to provide specific recommendations for recruitment 

activities, and determine the probability that patients of specific racial/ethnic groups 

will find suitable HLA-matched cells. 

o Annual patient outcomes for each transplant center. 

o Transplant research to the public, researchers, and health care professionals. 

 Stores blood samples from donors and patients that will be used for transplant research. 

2.4.3 What is the Center for International Blood and Marrow 

Transplant Research (CIBMTR)? 

The CIBMTR was created to collaborate with the worldwide scientific community, to advance 

the fields of hematopoietic (blood) stem cell transplantation (HCT) and cellular therapy research. 

As a combined research program of the Medical College of Wisconsin (MCW) in Milwaukee and 

the National Marrow Donor Program (NMDP) in Minneapolis, the CIBMTR facilitates important 

clinical research to increase survival and enrich the quality of life for thousands of HCT patients. 

The CIBMTR is a unique resource of data and statistical expertise. Its services are available to 

the scientific community for addressing important issues in HCT. It is made up of two parts: a 

network of more than 450 transplant centers that share data on HCT outcomes, and a Statistical 

Center that maintains a clinical database with information about more than 300,000 transplants 

(as of the end of 2009). This database and the analytic support provided by the Statistical 

Center have led to successful completion of hundreds of studies that have had an important 

impact on clinical practice. 

The CIBMTR has campuses in Milwaukee and Minneapolis, with staff consisting of more than 

135 medical, statistical, clinical research and administrative personnel, including 13 MD 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

40

Scientific Directors with advanced training in biostatistics and related fields, 15 Masters-level 

biostatisticians, and seven PhD statisticians. 

CIBMTR has a system of committees that was designed to obtain a broad range of input, to 

ensure that its activities match the priorities of the scientific community it serves. As of 

December 2009, there were 225 observational research studies in progress using the CIBMTR 

databases. The research agenda of CIBMTR is accomplished within the framework of 19 

Working Committees that are responsible for: 

 Designing and conducting studies relevant to their subject area and involving CIBMTR 

data, statistical resources, networks and/or centers; 

 Considering proposals to use CIBMTR data for studies pertinent to their subject area; 

 Periodically assessing and revising relevant sections of CIBMTR data collection forms; 

 Planning and conducting workshops at CIBMTR meetings; and 

 Setting priorities for future CIBMTR studies. 

CIBMTR serves the public and the biomedical community in diverse and evolving ways. One is 

through its historic role of providing estimates about how well HCT will work for a particular 

condition by analyzing the information on past transplants from many centers. It also determines 

the potential benefits and adverse effects of emerging technologies and identifies uncommon 

events that may occur in long-term transplant survivors. Statistical Center personnel have a 

strong record of expert, innovative analyses of these and other data. CIBMTR Working 

Committees include representatives from hundreds of HCT centers around the globe. CIBMTR 

data and statistical resources are sought and used by scientists, clinicians, health policy-makers 

and the public. 

2.4.4 What is Hematopoietic Stem Cell Transplantation (HCT)? 

Hematopoietic (blood) cell transplants are widely used to treat several malignant and nonmalignant diseases. They include hematologic malignancies (e.g. leukemia, lymphoma, multiple 

myeloma and others), neuroblastoma, ovarian and testicular cancer, myelodysplasia (MDS), 

aplastic anemia, congenital immune deficiencies, inborn errors of metabolism and recently, 

autoimmune diseases. 

HCT may use cells from a related or unrelated donor (allogeneic transplants) or from patients 

themselves (autologous transplants). The cells may be collected from bone marrow, peripheral 

(circulating) blood or umbilical cord blood. Before the cells are infused into the recipient, 

chemotherapy and/or radiation (conditioning) is used to suppress the recipient’s immune system 

so that the donor cells will engraft (become a working part of the recipient’s body) and/or 

eradicate the malignant disease. 

Conditioning processes (therapy given to prepare the recipient for transplantation) vary and are 

evolving rapidly, as are the strategies for collecting donor cells. New techniques are also being 

developed for treating graft-versus-host disease (GVHD, a common complication of 

transplantation) and for treating patients after their HCT. New technologies hold promise for 

decreasing the toxicity of chemotherapy, while maintaining or even enhancing the anti-tumor 

effects of the transplant. This has led to wider use of HCT for treating more patients. HCT can 

be life-saving in that it cures at least some patients who are considered incurable with other 

therapies. 

HCT is also intensive, costly and carries high risks of morbidity (side effects) and mortality 

(death). Risks early in the process include infection, mucositis (painful inflammation of the lining 

of the digestive tract), non-engraftment (failure of the cells to grow in the recipient), acute GVHD 

and organ toxicity. Transplant-related mortality ranges from 3 percent to greater than 50 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

41

percent, depending on the underlying disease, the recipient’s age and medical status and the 

type of graft. Most transplant-related deaths occur in the first year after the HCT. 

HCT is also associated with a risk for long-term negative physical, psychological and 

psychosocial effects. Some of the potential later complications include chronic (ongoing) GVHD, 

infection, respiratory diseases, cataracts, bone degeneration, endocrine disturbances, cognitive 

difficulties, relapse and therapy-related cancers. These late effects lead to persistently high 

death rates for HCT recipients and may negatively affect their performance of daily activities, 

interpersonal relationships and sense of well-being. 

The challenge for physicians is to identify the patients who are most likely to benefit from HCT 

and to select the treatment strategies most likely to lead to good outcomes. The challenge for 

clinical scientists is to pursue the most promising avenues for improving outcomes in the most 

efficient manner. The CIBMTR plays a vital role in providing the information they need to meet 

these challenges. 

2.4.5 What is Outcomes Analysis? 

Assessing HCT outcomes is challenging for many reasons, including the following: 

 The diseases treated with HCT are uncommon, so statistical analysis is difficult. 

 New HCT technologies are being rapidly developed, so the results of some clinical 

(investigational) trials may be obsolete before they are even published. 

 Some important HCT issues cannot be tested with randomized trials. These include the 

influences of HLA matches or how gene profiles affect the success of a transplant. 

 Most clinical trials focus on short- and intermediate-term outcomes (1-5 years). Yet, HCT 

may have important effects, such as therapy-related cancers, that occur many years 

after transplantation. 

A database that includes the results of research from many centers (observational database), 

such as the one managed by CIBMTR for the SCTOD, helps scientists understand HCT 

outcomes by addressing questions that cannot be studied through randomized trials or single 

transplant center studies. These include: 

 Describing HCT results for particular diseases and patient groups; 

 Determining what factors are most important in a patient’s prognosis; 

 Defining what will vary between centers as far as diagnosis and practice, and how that 

may affect outcomes; 

 Evaluating long-term outcomes, including quality of life (QOL); and 

 Developing analytic approaches to evaluating HCT outcomes. 

An observational database can be an asset in planning clinical trials. It helps by: 1) identifying 

the most promising questions (hypothesis generation); 2) providing realistic estimates of 

baseline outcomes and whether enough patients in the appropriate groups might be available 

for the study (eligibility criteria); and 3) allowing different statistical designs to be simulated. An 

observational database can also be used to study whether the results of one study can be 

generalized to other patient groups who did not participate in that study. 

Analyzing HCT outcomes poses challenges that cannot be met by standard statistical methods. 

They include: 

 The complexity of creating statistical models for the post-HCT period, when patients are 

transitioning between numerous states of health, including episodes of engraftment, 

GVHD, relapse, and a variety of post-HCT therapies. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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 Competing risks that must be accounted for in the statistical analysis. These result when 

the occurrence of one outcome (e.g., death from regimen toxicity), prevents the 

occurrence of another (e.g., relapse). 

 Secondary variables, such as GVHD or immune suppressive treatment, which may 

change over time and affect the outcomes at different times. 

 Treatments started at varying stages in the disease for different patients. 

 Potential effects and biases in treatment assignment from one center to another (center 

effects). 

 Patients for whom HCT was intended but not delivered because of intervening medical 

problems. 

These statistical problems require development or extension of new statistical tools by 

investigators with expertise in both the clinical and statistical challenges of HCT. 

2.4.6 CIBMTR Data Collection 

Data collected for the SCTOD includes: 

 Allogeneic HCTs performed in the United States using related or unrelated donors; 

 Allogeneic HCTs using U.S. donors, whether the transplant is performed in the United 

States or elsewhere; and 

 Use of allogeneic hematopoietic stem cells for emerging clinical applications other than 

hematopoietic cell recovery. 

2.4.6 1 Privacy and Confidentiality 

CIBMTR is fully committed to and appreciates the importance of maintaining the privacy and 

confidentiality of all patients and donors. CIBMTR and NMDP are fully compliant with Federal 

Regulations regarding privacy and confidentiality, including the Common Rule and the Privacy 

Rule. 

The SCTOD contract authorized CIBMTR as a Public Health Authority to collect the information 

needed by the SCTOD. HCT centers, regardless of their status as a “covered entity,” are 

allowed to disclose protected health information to CIBMTR without an individual’s written 

consent or authorization, to allow CIBMTR to fulfill its statutory obligations as a Public Health 

Authority. 

In addition to reporting to the government about the C.W. Bill Young Cell Transplantation 

Program, CIBMTR is also expected to use the data collected for the Program, whenever 

possible, for research to advance the field. All observational studies use existing data from the 

records of patients treated in participating CIBMTR institutions. The CIBMTR does not direct or 

suggest how patients in participating institutions are treated. The observational database of the 

CIBMTR and the studies performed using this database have been reviewed and approved 

annually by the Institutional Review Board (IRB) of MCW since 1987, in compliance with the 

Common Rule for the protection of human subjects. 

Physical and technical security measures at CIBMTR comply with federal security standards 

defined by the SCTOD contract. The CIBMTR information network infrastructure is completely 

segregated from other departments at MCW. A systems security plan was developed, and in 

December 2008, CIBMTR achieved HRSA Office of Information Technology Authority to 

Operate based on documentation provided since October 2006. 

2.4.6.2 Data Collection Standards 

Basic information is collected for all allogeneic and autologous HCTs on a form called the 

Transplant Essential Data (TED) form. TED forms were developed by CIBMTR in collaboration 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

43

with the European Group for Blood and Marrow Transplantation (EBMT). This minimizes work 

for centers that participate in both organizations (approximately 30 percent of CIBMTR centers) 

and allows for better collaboration between the two organizations. The TED forms were revised 

to accommodate the needs of the SCTOD with input from representatives of the EBMT, AsianPacific Blood and Marrow Transplant Group, Australia-New Zealand Registry, the ASBMT, 

FACT, and other national and international HCT organizations. TED forms represent 

international consensus on a basic data set for all HCT recipients. 

The data collection forms required by the SCTOD include: 

 Pre-Transplant Essential Data Form 

 Post-Transplant Essential Data Form 

 Unique ID Assignment Form 

 Recipient Death Form 

The following forms are also required in some cases, including cord blood and related donor 

transplants: 

 Infectious Disease Markers 

 Confirmation of HLA Typing 

 Hematopoietic Stem Cell Transplant (HCT) Infusion 

CIBMTR data collection forms can be found at: 

http://www.cibmtr.org/DataManagement/DataCollectionForms/index.html. 

An electronic data collection system, FormsNetTM 2.0 (a Web-based application designed 

specifically for the SCTOD), is used to provide a single electronic platform to collect all data 

requested by the CIBMTR. FormsNet2 is available to all U.S. transplant centers and non-U.S. 

CIBMTR transplant centers to help them submit the outcomes data required by the Stem Cell 

Therapeutic and Research Act of 2005. 

FormsNet2 allows bi-directional communication between centers, including handling 

notifications for expected or missing data. It includes automated validation checks within and 

between forms, and it automatically generates error reports. In the future, FormsNet2 will make 

pre-programmed queries available to transplant centers for several of the outcomes reports and 

will allow customized reports to be produced. 

2.4.6.3 Data Collection Efforts of CIBMTR

The CIBMTR collects data on large numbers of transplant recipients every year, including 

information on new patients and follow-up information on previously reported patients. In the 

past, the data came from two sources: CIBMTR centers, which voluntarily registered 

consecutive transplant recipients; and NMDP transplant centers that were required to provide 

comprehensive outcome data on all transplants facilitated by NMDP. 

Now, all U.S. transplant centers are required to submit outcomes data on allogeneic transplants 

to a single national registry: CIBMTR. CIBMTR continues to receive voluntarily submitted data 

from its international centers and from centers performing autologous transplants not covered 

by the new law. Collection of this new level of data (SCTOD pre- and post-Transplant Essential 

Data) began on December 3, 2007. The system was not available to 100 percent of U.S. 

centers until early 2008, so data received via the new electronic system was not fully 

representative of all contributing centers until then. 

A list of institutions that are reporting data to CIBMTR is in Appendices B and C. CIBMTR 

estimates that it now collects data on nearly all allogeneic HCTs done in the United States. It 

also receives data on about 25 percent of allogeneic transplants done elsewhere and about 60 

percent of autologous HCTs done in North and South America through the end of 2008. With 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

44

the launch of the C.W. Bill Young Cell Transplantation Program, CIBMTR began collecting data 

on all allogeneic HCTs in the United States in 2008. 

Figure 19 shows the number of allogeneic transplants done per year since data collection began 

in 1970, and autologous transplants done since data collection began in 1990. 

Figure 19. Number of transplants per year registered with the CIBMTR since it began collecting allogeneic 

transplant data in 1970 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

45

Figure 20 shows cumulative information on related donor transplants, autologous transplants, 

and unrelated donor transplants facilitated through NMDP since 1987. 

Figure 20. Cumulative totals for registered transplants 

2.4.6.4 Overall Data Collection 

The following tables summarize the distribution of HCT by disease for which data was collected 

and the quantity of data collected by CIBMTR. Along with Figures 19 and 20 in the previous 

section, they include information about allogeneic transplants since 1970 and autologous 

transplants done since 1989. 

Table 9 shows the distribution of transplants worldwide by disease available in the CIBMTR 

Research Database. 

Disease 2008-2009 

Allogeneica

2008-2009 

Autologous

Cumulative 

Allogeneic

Cumulative 

Autologous

Acute lymphoblastic leukemia 3,293 32 27,059 1,549

Acute myelogenous leukemia 6,032 403 42,594 7,552

Chronic myelogenous leukemia 1,859 1 26,996 730

Chronic lymphocytic leukemia 650 10 3,067 607

Hodgkin disease 87 1,626 1,182 15,733

Non-Hodgkin lymphoma 1,446 3,795 10,650 37,565

Plasma cell disorders 165 6,150 3,100 34,791

 

a

 Includes allogeneic transplants [IBMTR] since 1970, allogeneic and autologous transplants [ABMTR] since 1989, 

NMDP since 1987; registration began in 1991 and comprehensive data collection in 1992; data for 1989-90 were 

collected retrospectively. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

46

Disease 2008-2009 

Allogeneica

2008-2009 

Autologous

Cumulative 

Allogeneic

Cumulative 

Autologous

Breast cancer (12) 83 181 23,289

Neuroblastoma 9 418 183 3,411

Ovarian cancer 1 20 23 1,708

Melanoma - - 48 59

Lung cancer - 5 10 231

Sarcoma (soft tissue, bone and 

other)

(1) 5 37 703

Ewing sarcoma 4 10 75 813

Wilm tumor - 34 7 307

Myelodysplastic syndromes 2,170 7 12,871 251

Other leukemia 394 6 2,085 394

Medulloblastoma - 138 5 826

Germ cell tumor 2 67 12 690

Brain tumors (1) 80 4 1,184

Testicular cancer 1 122 9 1,410

Other malignanciesb26 198 1,085 1,498

Autoimmune diseasesc10 40 69 388

Severe aplastic anemia 1,461 2 10,143 17

Inherited erythrocyte 

abnormalities

29 (1) 4,865 4

SCID and other 

immunodeficienciesd

390 2 3,768 6

Inherited disorders of metabolism 218 - 1,884 4

Histiocytic disorders 181 1 818 8

Other non-malignancies 50 12 380 333

TOTAL 18,464 13,266 153,210 136,061

Table 9. Distribution of transplants worldwide by disease available in the CIBMTR Research Database 

through 2009 (Data continue to accrue in this reporting period) 

Table 10 shows the number of transplants worldwide for which data were submitted to CIBMTR. 

Type of Transplant 2008 2009 Life-to-Date*

Allogeneic 8,749 9,169 178,841

Autologous 7,836 8,501 149,759

TOTAL 16,585 17,670 328,600

Table 10. Number of transplants worldwide for which data were submitted to CIBMTR by year 

 

b Includes retinoblastoma, head and neck tumors, mediastinal neoplasms, GI tract tumors, pancreatic cancer, 

hepatobiliary, kidney and urinary tract tumors, prostate cancer, cervical, uterine cancer, vaginal cancer and thymoma 

c Includes multiple sclerosis (n=150), systemic sclerosis (n=91), systemic lupus erythematosis (n=75), rheumatoid 

arthritis (n=15), ITP (N=10), Crohn’s disease (n=12) and other (n=104) in registration data 

d SCID=Severe Combined Immune Deficiency 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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2.4.7 Data Quality 

2.4.7.1 Program Description 

CIBMTR does extensive internal quality checks for missing and inconsistent data. These checks 

have been incorporated into FormsNet2, CIBMTR’s electronic data collection system, so that 

data can be verified at the time it is entered. 

The separate NMDP and CIBMTR forms submission quality control plans and auditing 

programs are now integrated into a single Continuous Process Improvement (CPI) Program and 

Audit Program. The unified CPI program, targeted to begin in spring 2010, will monitor 

submission of forms for all types of transplants (related donor, unrelated donor and autologous) 

on a trimester basis. Centers are required to submit at least 90 percent error-free forms within a 

trimester. 

CIBMTR and NMDP have had on-site auditing programs for their Research Centers since 1989 

and 1998, respectively. These programs audited transplant centers on a 3-4 year cycle, 

comparing the data that had been submitted with the medical records. They require centers to 

have error rates of less than five percent. Centers that do not meet this standard must submit a 

plan for correction and be re-audited. More than 365 audits were performed by CIBMTR and 

NMDP since 2003, with an overall error rate of less than two percent. 

The new unified Audit Program uses a four-year audit cycle, with centers randomly assigned to 

year 1, 2, 3, or 4 of the initial cycle. Up to 16 cases are audited at any given center. The audit 

concentrates on “critical” data; that is, data most likely to be included in a research study. These 

include, among other data, what disease the patient had, disease status (progression), 

conditioning regimen, date of transplant, and last contact date. Randomly selected “non-critical” 

data are also audited for each patient. Consecutive reporting and Institutional Review Board 

(IRB) oversight are also reviewed and documented. 

2.4.7.2 Number of audits by year, 2008-09

Table 11 shows the number of audits by year from 2008 to 2009. 

Year of Audit Number of audits

2008 34

2009 31

Total 65

Table 11. Number of audits by year 

2.4.8 Data Shared with Others 

2.4.8.1 Data Available to the Public 

A Web site is available at http://bloodcell.transplant.hrsa.gov/index.htm to provide general 

information about HCT, research data, and relevant published material to the public. It includes 

descriptions of CIBMTR research results in lay language and annual transplant center-specific 

outcomes reports (see Sections 2.1.2.4 and 2.4.9). The content is reviewed periodically by 

HRSA, NMDP, the CIBMTR Consumer Advocacy Committee, and transplant physicians to 

ensure that it is both accurate and understandable to a lay audience. 

The site includes information about the uses and outcomes of HCT using data reported to the 

CIBMTR by participating transplant programs worldwide. This information is useful for 

understanding trends in the use of HCT based on diseases treated, donor type, graft sources, 

patient age, and transplant regimes. It is available to physicians, researchers, and the public in 

several formats, including a series of slide sets that can be printed or requested for 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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presentation. Early outcomes of HCT, such as description of outcomes of HCT, including 100 

day, 1 year survival and general causes of death are also included in this series. Color summary 

slides may be viewed at 

http://www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/index.html. The slides 

are also reproduced in black and white in Appendix G. 

2.4.8.2 Information Requests Fulfilled By Year 

In addition to providing general information about HCT on a routine basis through publications 

and its Web sites, CIBMTR answers requests for customized information. The CIBMTR 

database is a valuable informational resource about HCT for researchers and non-research 

organizations. CIBMTR makes data about HCT available upon request to a large variety of 

public and private entities in a timely way. The distribution of requests is displayed in Table 12. 

Type of Organization

Number of 

Information 

Requests in 2008

Number of 

Information 

Requests in 2009

Total

Information 

Requests

Physician 454 557 1011

Pharmaceutical/Biotech Company 91 153 244

Patient or Relative 20 15 35

Patient Advocacy Group 20 57 77

Market Research Firm 15 19 34

Federal Government Agency 11 12 23

State Government Agency 1 2 3

Insurance Company 10 14 24

Medical Society 8 4 12

Student 13 13 26

News Media 10 5 15

Law Firm 1 1 2

Cord Blood Bank 2 3 5

TOTAL 656 855 1511

Table 12. Information requests fulfilled by year 

While preserving the privacy and confidentiality of patients and donors, CIBMTR is and will 

remain committed to making data available to patients, physicians, transplant centers, other 

HCT-related organizations, and the public. This is also a requirement of the SCTOD contract. All 

electronic or paper requests for data must be made using a Data Request Form that outlines the 

Data Release Policy. The form lists what information must be submitted, including data 

required, requestor identification, and purpose of request. It can be found at 

http://www.cibmtr.org/Data/Request/CustomRequests/index.html. Simple questions (e.g. 

general information about Program activity or combined outcomes data for common HCT uses), 

can also be accessed via the http://bloodcell.transplant.hrsa.gov/index.htm Web site. Requests 

are answered on a first-come, first-served basis, usually within five business days of the 

request. Responses to these queries are generally reviewed by a physician scientist for 

accuracy and appropriateness before they are released. 

2.4.8.3 CIBMTR Presentations and Publications 

The observational data collected by the CIBMTR is used to inform patients and health care 

professionals through presentations at professional society meetings, and through publications 

in professional journals. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Information about CIBMTR accomplishments and data was given in formal presentations by 

CIBMTR faculty and others at national and international meetings in excess of 100 times per 

year in 2008 and 2009. These data were also used to promote the work of the CIBMTR at local 

and regional meeting presentations and for teaching purposes, enlarging the educational 

outreach of CIBMTR research within the transplant community, as well as creating awareness 

of CIBMTR and its activities with new and varied audiences. Scientific abstracts presented at 

the two largest HCT meetings in the United States in 2008 and 2009 are shown in Table 13. 

Meeting Number of Abstracts 

Presented in 2008

Number of Abstracts 

Presented in 2009

American Society of Hematology 24 20

BMT Tandem Meetings 6 12

Table 13. Presentations given at professional meetings by year 

Publications from 2008 and 2009, which resulted from research conducted by the CIBMTR and 

NMDP using their observational databases and other resources, are summarized in Table 14 

and listed in Appendix F. 

Source of Publication Number of 

Publications in 

2008

Number of 

Publications in 

2009

Total Number 

of Publications

CIBMTR Grand Total 60 45 105

CIBMTR Working Committee 

Publications

41 37 78

Bioinformatics 7 3 10

Biostatistics 11 3 14

Blood and Marrow Transplant 

Clinical Trials Network

1 1 2

Health Services Research 0 1 1

Table 14. CIBMTR publications by source 

2.4.9 Transplant Center-specific Survival Rates 

2.4.9.1 Program Summary 

NMDP has been comparing transplant center outcomes for unrelated donor HCTs since 1994 

(see Section 2.1.2.4). The Program now requires this from CIBMTR, but the current information 

includes only NMDP-facilitated unrelated donor transplants. Future analyses will also include 

related donor allogeneic transplants when enough patients have been reported to allow for valid 

statistical analysis of center outcomes (anticipated to occur in 2010). The current report gives 

one-year survival statistics for all U.S. transplant centers performing unrelated donor 

transplants, using a five-year rolling window. It compares observed and expected survival rates 

with a 95 percent confidence interval. Because centers vary considerably in the risk level of the 

cases they treat, a statistical model has been developed to adjust for several risk factors known 

or suspected to influence outcomes. 

The method of risk adjustment uses a model for one-year survival probability based on patient 

risk factors. It computes the risk-adjusted one-year survival rate for each center as if the 

patients had been transplanted at a “generic” center, and then compares the actual survival rate 

at that center with the predicted survival rate to assess the center’s performance compared to 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

50

the overall network. Reports are submitted to HRSA each year and published online at 

http://bloodcell.transplant.hrsa.gov/RESEARCH/Transplant_Data/US_Tx_Data/index.html. 

2.4.9.2 Future Center-specific Outcomes Reports 

With the Stem Cell Therapeutic and Research Act of 2005, the requirement to report outcomes 

of HCT by transplant center was broadened to include all allogeneic (related and unrelated) 

HCTs in the United States. During this initial transition phase of the C.W. Bill Young Cell 

Transplantation Program, CIBMTR is working with NMDP, ASBMT, FACT, transplant centers, 

and HRSA to review the current approach to center-specific outcomes reporting and to make 

recommendations for future reports. 

Participants in meetings on center-specific outcomes reports have developed recommendations 

for new approaches to future HCT center outcomes reports that are scientifically valid, 

equitable, free from bias, useful to the HCT community for improving quality, and informative for 

the public. A review of these recommendations is planned for late 2010. Since collection of 

outcomes data for related-donor recipients in the United States was voluntary until the end of 

2007, it is anticipated that the first center outcomes report to include related-donor HCT 

recipients will be produced in 2010. 

2.4.10 Quality of Life Studies 

CIBMTR has conducted a large observational Quality of Life (QOL) study on HCT recipients. 

Based on Program requirements, it will perform additional QOL studies for a limited number of 

patients. A pilot study, using paper-based questionnaires is anticipated to begin in 2010. Future 

plans include use of a Computer-Assisted Telephone Interview system, which will centralize 

data collection. 

Collection of high-quality QOL information requires the use of many resources, and is 

complicated by several issues: 

 QOL data must be collected prior to a transplant as well as after, in order to compare 

changes in status. 

 Many of the current means of collecting QOL information rely on physicians’ 

observations rather than the patient’s own perceptions. 

 A variety of post-HCT issues must be measured that go beyond mere health status. 

 Collection of this type of patient data often requires additional Institutional Review Board 

approvals at each participating institution, since it may expose patients to psychological 

distress. 

 There is no recognized model for collecting this type of long-term, complex data in such 

a large population. 

 Local expertise is often needed for approaching and interviewing patients. 

QOL data collection requires careful thought to devise studies that will collect high-quality data. 

CIBMTR has consulted with recognized experts in measurement of QOL in HCT recipients to 

develop its plan and to address the complexities of this type of research. The new CIBMTR 

study will use QOL surveys that place the least possible burden on patients and transplant 

centers, but are able to define meaningful differences in QOL. 

In the future, CIBMTR may solicit research proposals from other experts to study QOL in 

specific patient groups, study specific QOL questions across patient groups, or to focus on 

centers that are willing to perform studies to evaluate QOL in HCT recipients at their center. 

CIBMTR is committed to advancing knowledge in this important and understudied area. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

51

2.4.11 Other Therapeutic Applications 

Another requirement of the SCTOD contract is for CIBMTR to maintain a system for collecting 

and analyzing transplant outcomes information when cells derived from bone marrow, 

peripheral blood or umbilical cord blood are used for clinical applications other than HCT (e.g. 

for cardiac or central nervous system regeneration). Key data to be collected and potential data 

sources (i.e., blood banks and collection centers, cord blood banks, processing centers, clinical 

centers, FDA) have been identified. CIBMTR will be assisted in this undertaking by the Steering 

Committee for the Specialized Centers for Cell-Based Therapy (SCCT) and The EMMES 

Corporation. The EMMES Corporation is the data coordinating center for both SCCT and the 

Production Assistance for Cellular Therapies (PACT) group. Innovative approaches to data 

collection are needed to identify clinical centers that are involved in this new area of research 

and to identify NIH-funded projects that use this technique. 

2.4.12 Research Repository 

Since 1988, NMDP has maintained a Research Repository (the Repository) for collecting blood 

specimens from unrelated pairs of adult donors and recipients of hematopoietic stem cells that 

were facilitated by NMDP. The Repository collects, processes and stores pre-HCT blood 

samples for DNA-based analyses. 

In 2006, NMDP began collecting samples from NMDP-facilitated cord blood transplants. The 

cord blood research sample inventory has grown rapidly, adding 1623 samples in 2008 and 

2009, and contained more than 2,600 samples by the end of 2009, as shown in Table 15. 

Sample Type 2008 Total 2009 Total Total 2008-09

Donor 3,411 3,835 7,246

Recipient 3,160 3,535 6,695

Cord 700 923 1,623

All samples 7,271 8,293 15,564

Donor/Recipient Pairs 1,761 2,257 4,018

Table 15. Unrelated donor transplant research samples collected by calendar year 

In 2007, NMDP and CIBMTR established a related donor-recipient sample repository. Because 

patients inherit the genetic material that determines HLA type from their parents, having pairs of 

samples from related donors and recipients will make it easier for researchers to conduct certain 

types of studies because the samples will have the same HLA types. Sample collection for 

related donor-recipient pairs began in December 2007 when FormsNet2 was released. Table 16 

shows related donor transplant research samples collected by calendar year. 

Sample Type Number of Samples 

Collected in 2008

Number of Samples 

Collected in 2009

Total Samples 

Collected 2008-09

Donor 175 235 410

Recipient 171 262 433

Cord 0 0 0

All samples 346 497 843

Donor/Recipient Pairs 158 214 372

Table 16. Related donor transplant research samples collected by calendar year 

The Repository provides research samples for use in studies approved through CIBMTR 

research programs as well as to participant transplant centers for clinical follow-up. Since it 

began, the Repository has distributed nearly 134,000 unrelated donor-recipient samples to 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

52

investigators worldwide to support research. The knowledge gained from research using these 

unique and precious repository samples could make allogeneic HCT a viable treatment option 

for more patients. 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

53

Section 3: Appendices 

List of Appendices 

A Glossary of Terms 

B U.S. centers reporting data to NMDP and CIBMTR: sorted by state 

C Non-U.S. centers reporting data to NMDP and CIBMTR: sorted by country 

D Related Web links 

E Map of worldwide transplant centers providing data to NMDP and CIBMTR 

F CIBMTR Publications 

G CIBMTR Summary Slides 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

54

Appendix A: Glossary of Terms 

Glossary Term Definition

allele One member of a pair or series of different forms of a gene. There are two or 

more alleles at a given location on a chromosome. Each allele is 

characterized by a slightly different nucleotide sequence. Alleles can only be 

identified through molecular (DNA) typing.

allogeneic A form of bone marrow or peripheral blood stem cell transplant in which a 

patient receives cells collected from a sibling, other related donor or an 

unrelated donor. 

anemia A condition in which the number of red cells or the amount of hemoglobin in 

the blood is abnormally low. Anemia is not a disease; it is a symptom of 

various underlying diseases.

apheresis A technique for separating blood into its components. An apheresis machine 

draws blood from a vein in a donor’s arm, collects the desired blood product 

(such as peripheral blood stem cells), and returns the remaining blood 

components to the donor.

aplastic anemia A disorder of the bone marrow that causes deficient production of all types of 

blood cells.

autologous A form of transplantation in which marrow or peripheral blood stem cells 

(PBSCs) are collected from a patient, cryopreserved, and then returned to 

the same patient after he/she has undergone myeloablative (conditioning) 

therapy. In a process called purging, the autologous marrow is treated to try 

to remove cancer cells.

BMT Bone marrow transplant or bone marrow transplantation. (See also HCT.)

conditioning Treatment with high-dose chemotherapy, and sometimes high-dose radiation 

therapy, to prepare a patient for hematopoietic stem cell transplantation 

(HCT). (See also reduced-intensity conditioning and myeloablative therapy.)

cord blood

or cord blood 

unit (CBU)

An alternate source of hematopoietic stem cells that can be used to 

reconstitute the immune system of a recipient. Cord blood is collected from 

the placenta and umbilical cord soon after birth and then cryopreserved until 

needed by a patient.

CT Confirmatory typing. A step in the NMDP donor search process where an 

NMDP transplant center tests a blood sample from a potential donor or cord 

blood unit to confirm that the donor has a similar HLA tissue type and is 

compatible with the patient.

donor An individual who has actually donated hematopoietic cells to a patient. In 

contrast, volunteer donor, potential donor and potential volunteer donor are 

used interchangeably to refer to individuals listed on the NMDP Registry.

DR typing HLA typing to determine the HLA-DR locus in the blood of a volunteer donor 

or patient. HLA-DR typing is almost exclusively performed by DNA-based 

HLA typing (see separate entry).

engraftment The process in which transplanted hematopoietic stem cells begin to grow in 

the bone marrow of the recipient and to produce new white blood cells, red 

blood cells and platelets.

event-free 

survival

The period of time following a transplant in which no major complications 

such as disease relapse or death occur.
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Glossary Term Definition

formal search The point in the NMDP donor search process where more specific 

information is requested about individual volunteer donors, who have been 

identified as potential HLA matches with a patient.

graft Tissue taken from one person (donor) and transferred to another person 

(recipient). Also, tissue taken from one part of a person’s body and 

transferred to another part of that same person’s body.

GVHD Graft-versus-host disease. A common complication of hematopoietic stem 

cell transplantation whereby the recipient’s body triggers the immune 

defenses of the transplanted hematopoietic stem cells. These cells then 

attack the recipient’s body. GVHD, which can range from mild to lifethreatening, usually involves the skin or internal organs.

haplotype Set of closely linked genes that tends to be inherited together as a unit; a 

combination of alleles at multiple locations that are transmitted together on 

the same chromosome.

HCT Hematopoietic stem cell transplant. The transplantation of blood-forming cells 

derived from the bone marrow, peripheral blood or cord blood.

hematopoietic Pertaining to the production and development of blood cells. The leukemias 

are hematopoietic diseases.

hematopoietic 

cells

Cells in the marrow, umbilical cord and peripheral blood that are capable of 

developing into all three types of blood cells: white blood cells, red blood 

cells and platelets. Cord blood transplants, bone marrow transplants and 

peripheral blood stem cell transplants all provide the hematopoietic stem 

cells needed to rejuvenate a transplant recipient’s immune system.

histocompatibilityRefers to the degree of HLA (tissue) matching between two individuals. Cells 

from highly histocompatible individuals can survive in each other’s bodies 

without triggering an immune response.

HLA Human leukocyte antigens. Proteins (markers) on the surface of most of the 

body’s cells that allow the immune system to distinguish between the body’s 

cells and foreign cells. In hematopoietic stem cell transplantation, three or 

more HLA markers (HLA-A, HLA-B and HLA-DR) are matched between 

donors and recipients to reduce the chance of triggering an immune system 

response.

HLA typing The process of determining an individual’s HLA tissue type. In hematopoietic 

stem cell transplantation, volunteer donors and potential recipients are HLA 

typed at three locations (A, B, and DR) on the gene that determine the most 

important of an individual’s tissue type characteristics.

leukemia Any of the chronic or acute malignant diseases characterized by unrestrained 

growth of leukocytes (white blood cells).

locus The locus is the position of a gene on a chromosome. There are three 

locations typically used for tissue typing in hematopoietic stem cell 

transplants: A, B, and DR on the major histocompatibility complex on 

chromosome 6.

lymphoma Cancer of the lymphatic system, which includes the bone marrow, spleen, 

thymus, lymph nodes and the network of vessels that carry fluid and 

infection-fighting cells. Included in this disease category are Hodgkin Disease 

and Non-Hodgkin Lymphoma.

malignant Characterized by unrestrained growth; cancerous.
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Glossary Term Definition

multiple 

myeloma

Cancer of the bone marrow, that leads to overproduction of plasma cells. 

Characterized by the formation of multiple tumor masses in the bone and 

bone marrow. More common in males than in females.

myeloablative 

therapy

Treatment with high-dose chemotherapy and high-dose radiation that 

irreversibly damages the bone marrow cell function of the recipient and 

prepares them for hematopoietic stem cell transplantation (HCT).

neuroblastoma A cancer that forms in the nerve tissue. Usually starts in the adrenal glands, 

may also start in neck, chest or spinal cord. Often begins in early childhood.

non-malignant Not cancerous.

PBSC Peripheral blood stem cells. Hematopoietic cells present in the circulating 

(peripheral) bloodstream. To collect sufficient PBSCs for a transplant, a 

growth factor medication is used to cause hematopoietic stem cells to leave 

the marrow and enter the bloodstream.

preliminary 

search

A free search of the NMDP donor and cord blood registries for potential HLAmatched volunteer donors. 

radiation therapy Treatment with high-energy X-rays to kill cancer cells. Also called 

radiotherapy.

reduced-intensity Pre-transplant chemotherapy and/or radiation therapy that uses lower doses 

than standard conditioning regimens. Reduced-intensity conditioning 

regimens focus less on myeloablation and more on immune system 

suppression in the recipient to permit donor cells to engraft. (See 

myeloablative therapy)

relapse A recurrence of an illness after a period of remission.

remission A period of time where the disease is inactive in a patient with a chronic 

illness.

search process The process of comparing a patient’s HLA antigens to those of the volunteer 

bone marrow and peripheral blood stem cell donors and cord blood units 

listed on the NMDP Registry, and testing potentially matched donors to 

identify the best one for the patient.

summary report A summary of the results of a preliminary search. A summary report shows 

the number of potential donors that matched with the patient and their degree 

of match with the patient. Summary reports also show matching cord blood 

units (CBUs).

survival A primary measure of the level of success of a medical procedure. In 

evaluating bone marrow or other hematopoietic stem cell transplants, 

survival is expressed as a percentage of recipients surviving after a specified 

period of time. (See also Event-free survival.)

tissue typing See HLA typing.
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

57

Appendix B: U.S. Centers reporting data to NMDP and CIBMTR 

Sorted by State 

Transplant Center Name City State Transplants 

Performed

University of Alabama Birmingham Birmingham AL Allo / Auto

University of Arkansas for Medical Sciences Little Rock AR Allo only

City of Hope Samaritan Phoenix AZ Allo / Auto

Mayo Clinic Phoenix AZ Allo / Auto

University of Arizona Health Sciences Center Tucson AZ Allo / Auto

Alta Bates Medical Center Berkeley CA Allo / Auto

City of Hope National Medical Center Duarte CA Allo / Auto

University of California-San Diego La Jolla CA Allo / Auto

Scripps Clinic Research Foundation La Jolla CA Allo / Auto

Loma Linda University Medical Center Loma Linda CA Allo / Auto

University of Southern California Los Angeles CA Auto only

Cedars Sinai Medical Center Los Angeles CA Allo only

Children's Hospital of Los Angeles Los Angeles CA Allo / Auto

University of California (UCLA) Adults Los Angeles CA Allo only

Children's Hospital of Oakland Oakland CA Allo / Auto

St Joseph's Hospital Irvine Orange CA Auto only

Children's Hospital of Orange County Orange CA Allo / Auto

University of California Irvine Medical Center Orange CA Allo / Auto

Sutter Cancer Center Sacramento CA Allo / Auto

University of California-Davis Cancer Center Sacramento CA Allo / Auto

Rady Children's Hospital San Diego San Diego CA Allo / Auto

University of California - San Francisco San Francisco CA Allo / Auto

University of California San Francisco CA Allo / Auto

Stanford University Medical Center Stanford CA Allo / Auto

The Children's Hospital of Denver Aurora CO Allo / Auto

University of Colorado Hospital Aurora CO Allo / Auto

Rocky Mountain Cancer Center Denver CO Allo / Auto

Yale New Haven Hospital New Haven CT Allo / Auto

George Washington University Medical Center Washington DC Allo / Auto

Georgetown University Hospital Washington DC Allo / Auto

Children's National Medical Center Washington DC Allo / Auto

Christiana Care Health System Newark DE Allo / Auto

Medical Oncology Hematology Consultants, PA Newark DE Allo / Auto

Alfred I Dupont Hospital for Children Wilmington DE Allo / Auto

South Florida Bone Marrow Stem Cell Transplant 

Institute

Boynton Beach FL Auto only

Shands Hospital Gainesville FL Allo / Auto

Mayo Clinic Jacksonville Jacksonville FL Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Transplant Center Name City State Transplants 

Performed

Nemours Children's Clinic Jacksonville FL Allo / Auto

University of Miami - Peds Miami FL Allo / Auto

Miami Children's Hospital Miami FL Allo / Auto

University of Miami - Adults Miami FL Allo / Auto

Florida Hospital Cancer Institute Orlando FL Allo / Auto

Memorial Cancer Institute Pembroke Pines FL Auto only

All Children's Hospital St. Petersburg FL Allo / Auto

H Lee Moffitt Cancer Center Tampa FL Allo / Auto

Palm Beach Cancer Institute West Palm 

Beach

FL Auto only

Children's Healthcare of Atlanta at Egleston Atlanta GA Allo / Auto

The Blood and Marrow Transplant Group of GA Atlanta GA Allo / Auto

Emory University Atlanta GA Allo / Auto

Medical College Of Georgia Augusta GA Allo / Auto

Hawaii Medical Center Honolulu HI Allo / Auto

University of Iowa Hospital & Clinics Iowa City IA Allo / Auto

St Luke's Boise Regional Medical Center Boise ID Allo / Auto

Children's Memorial Hosp Chicago IL Allo / Auto

University of Illinois at Chicago Medical Center Chicago IL Allo / Auto

Northwestern Memorial Hospital Chicago IL Allo / Auto

Rush University Medical Center Chicago IL Allo / Auto

Northwestern Memorial Hospital Chicago IL Allo only

University of Chicago Medical Center Chicago IL Allo / Auto

Loyola University Medical Center Maywood IL Allo / Auto

Lutheran General Hospital Park Ridge IL Allo / Auto

Methodist Medical Center Peoria Peoria IL Auto only

Cancer Treatment Centers of America - Midwest Zion IL Allo / Auto

St Francis Hospital Beech Grove IN Allo / Auto

Central Indiana Cancer Centers Indianapolis IN Auto only

Riley Hospital for Children Indianapolis IN Allo / Auto

St Vincent Hospital Indianapolis Indianapolis IN Auto only

University of Kansas Medical Center Kansas City KS Allo / Auto

Via Christi Health System Wichita KS Allo / Auto

University of Kentucky Medical Center Lexington KY Allo / Auto

James Graham Brown Cancer Center Louisville KY Allo / Auto

Louisiana State University Children's Hospital New Orleans LA Allo / Auto

Tulane University Medical Center New Orleans LA Allo / Auto

Louisiana State University Health Sciences Center Shreveport LA Allo / Auto

Beth Israel Deaconess Medical Center Boston MA Allo / Auto

Dana Farber Cancer Institute - Adults Boston MA Allo / Auto

Tufts New England Medical Center Boston MA Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

59

Transplant Center Name City State Transplants 

Performed

Massachusetts General Hospital Boston MA Allo / Auto

Dana Farber Cancer Institute - Peds Boston MA Allo / Auto

Lahey Clinic Medical Center Sophia Gordon Cancer 

Center

Burlington MA Auto only

University of Massachusetts Medical Center Worcester MA Allo / Auto

University of Maryland School of Medicine Baltimore MD Allo / Auto

Johns Hopkins Oncology Center Baltimore MD Allo / Auto

National Institute Of Health Bethesda MD Allo only

National Institutes of Allergy & Infectious Disease Bethesda MD Allo / Auto

National Cancer Institute Bethesda MD Allo / Auto

National Heart Lung & Blood Institute Bethesda MD Allo only

NIH - Matched Unrelated Donor Program Bethesda MD Allo only

University of Michigan Cancer Center Ann Arbor MI Allo / Auto

Henry Ford Hospital Detroit MI Allo / Auto

Wayne State University Hospital Detroit MI Allo / Auto

Children's Hospital of Michigan Detroit MI Allo / Auto

Helen DeVos Children's Hospital Grand Rapids MI Allo / Auto

Abbott Northwest Hospital Minneapolis MN Auto only

Children's Hospital and Clinics of Minnesota Minneapolis MN Auto only

University of Minnesota Medical Center Minneapolis MN Allo / Auto

Mayo Clinic Rochester Rochester MN Allo / Auto

University of Kansas Medical Center Kansas City MO Allo / Auto

Children's Mercy Hospital Kansas City MO Allo / Auto

Cardinal Glennon Children's Hospital St. Louis MO Allo / Auto

Washington University School Of Medicine St. Louis MO Allo / Auto

St Louis University Medical Center St. Louis MO Allo / Auto

St Louis Children's Hospital St. Louis MO Allo / Auto

University of Mississippi Medical Center - Jackson Jackson MS Allo / Auto

Billings Clinic Hospital Billings MT Auto only

Montana Cancer Center Missoula MT Auto only

University of North Carolina at Chapel Hill Chapel Hill NC Allo / Auto

Levine Children's Hospital Charlotte NC Allo / Auto

Duke University, Immunology/BMT, peds Durham NC Allo only

Duke University Durham NC Allo / Auto

Duke University - Adults Durham NC Allo / Auto

Wake Forest University Baptist Medical Center Winston-Salem NC Allo / Auto

Alegent Health - Immanual Medical Center Omaha NE Allo / Auto

University of Nebraska Medical Center Omaha NE Allo / Auto

Dartmouth-Hitchcock Medical Center Lebanon NH Allo / Auto

Hackensack University Medical Center Hackensack NJ Allo / Auto

Cancer Institute of New Jersey New Brunswick NJ Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Transplant Center Name City State Transplants 

Performed

University of New Mexico Cancer Center Albuquerque NM Allo / Auto

Our Lady Of Mercy Medical Center Bronx NY Auto only

Montefiore Medical Center Bronx NY Allo / Auto

Roswell Park Cancer Institute Buffalo NY Allo / Auto

Arlin Cancer Institute Hawthorne NY Allo / Auto

North Shore University Hospital Manhasset NY Allo / Auto

Schneider Children's Hospital New Hyde Park NY Allo / Auto

St Vincent's Hospital Manhattan New York NY Auto only

New York Presbyterian Hospital New York NY Allo / Auto

Morgan Stanley Children's Hospital of New York New York NY Allo / Auto

Memorial Sloan-Kettering Cancer Center New York NY Allo only

Mt Sinai Hospital New York NY Allo / Auto

Columbia University New York NY Allo / Auto

University of Rochester Medical Center Rochester NY Allo / Auto

Stony Brook University Medical Center Stony Brook NY Auto only

State University of NY Upstate Medical University Syracuse NY Allo / Auto

Akron Children's Hospital Akron OH Allo / Auto

Jewish Hospital Cincinnati Cincinnati OH Allo / Auto

Cincinnati Children's Hospital Cincinnati OH Allo / Auto

Cleveland Clinic Cleveland OH Allo / Auto

Ireland Cancer Center, Univ. Hospitals Case Medical 

Ctr

Cleveland OH Allo / Auto

Nationwide Children's Hospital Columbus OH Allo / Auto

The Ohio State University Medical Center Columbus OH Allo / Auto

Miami Valley Hospital Dayton OH Auto only

Oklahoma University Medical Center Oklahoma City OK Allo / Auto

Cancer Care Assoc Oklahoma City Oklahoma City OK Allo / Auto

St Francis Hospital Tulsa OK Auto only

Cancer Care Associates Tulsa OK Allo / Auto

Providence Portland Medical Center Portland OR Auto only

Legacy Good Samaritan Hospital Portland OR Auto only

Oregon Health & Science University -Adult Portland OR Allo / Auto

Oregon Health & Science University -Pediatrics Portland OR Allo / Auto

Geisinger Medical Center Danville PA Allo / Auto

Penn State Milton S Hershey Medical Center Hershey PA Allo / Auto

St Christopher's Hospital for Children Philadelphia PA Allo / Auto

Fox Chase-Temple BMT Program Philadelphia PA Allo / Auto

Thomas Jefferson University Philadelphia PA Allo / Auto

Hospital of the University of Pennsylvania Philadelphia PA Allo / Auto

Hahnemann University Hospitals Philadelphia PA Allo / Auto

Philadelphia Children's Hospital Philadelphia PA Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

61

Transplant Center Name City State Transplants 

Performed

University of Pittsburgh Medical Center Pittsburgh PA Allo / Auto

The Western Pennsylvania Hospital Pittsburgh PA Allo / Auto

Children's Hospital of Pittsburgh Pittsburgh PA Allo / Auto

Guthrie Health Systems Sayre PA Auto only

Roger Williams Medical Center Providence RI Allo / Auto

Charleston Hematology Oncology Charleston SC Allo / Auto

Medical University of South Carolina Charleston SC Allo / Auto

Cancer Centers of the Carolinas Greenville SC Allo / Auto

Avera McKennan Transplant Institute Sioux Falls SD Allo / Auto

Thompson Cancer Survival Center Knoxville TN Auto only

Baptist Centers for Cancer Care Memphis TN Auto only

University of Tennessee Memphis TN Allo / Auto

St Jude Children's Research Hospital Memphis TN Allo only

Sarah Cannon BMT Program Nashville TN Allo / Auto

Vanderbilt University Veterans Center Nashville TN Allo / Auto

Vanderbilt University Nashville TN Allo / Auto

Texas Oncology Amarillo TX Allo / Auto

Arlington Cancer Center Arlington TX Auto only

Christus Spohn Cancer Center Corpus Christi TX Auto only

Children's Medical Center - Dallas Dallas TX Allo / Auto

Medical City Dallas Dallas TX Allo / Auto

University of Texas Southwestern Medical Center at 

Dallas

Dallas TX Allo / Auto

Baylor University Medical Center Dallas TX Allo / Auto

Cook Children's Medical Center Fort Worth TX Allo / Auto

Baylor College of Medicine Houston TX Allo / Auto

MD Anderson Cancer Center Houston TX Allo only

Wilford Hall Medical Center Lackland AFB TX Allo / Auto

Covenant Health Systems-Joe Arrington Cancer 

Research and Treatment Center

Lubbock TX Allo / Auto

Texas Tech University Health Sciences CenterSouthwest Cancer Center 

Lubbock TX Allo / Auto

Texas Transplant Institute San Antonio TX Allo / Auto

University of Texas Health Science Center San Antonio TX Allo / Auto

Scott & White Clinic & Hospitals Temple TX Auto only

Latter Day Saints Hospital Salt Lake City UT Allo / Auto

University of Utah Medical Center Salt Lake City UT Allo / Auto

University of Utah, BMT Program Salt Lake City UT Allo / Auto

Fairfax-Northern Virginia Hospital Fairfax VA Allo / Auto

Virginia Oncology Associates Norfolk VA Auto only

Virginia Commonwealth University Richmond VA Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Transplant Center Name City State Transplants 

Performed

University of Vermont Cancer Center Burlington VT Auto only

Fred Hutchinson Cancer Center Seattle WA Allo / Auto

VA Puget Sound Healthcare System Seattle WA Allo only

University of Wisconsin Hospital and Clinics Madison WI Allo / Auto

Marshfield Clinic Marshfield WI Allo / Auto

Aurora St Luke's Medical Center Milwaukee WI Auto only

Froedtert Memorial Lutheran Hospital Cancer Center Milwaukee WI Allo / Auto

Children's Hospital of Wisconsin Milwaukee WI Allo / Auto

West Virginia University Hospital Morgantown WV Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Appendix C: Non-U.S. centers reporting data to NMDP and 

CIBMTR:Sorted by Country 

Transplant Center Name City Country Transplants 

Performed

Hospital De Pediatria Buenos Aires Argentina Allo only

Hospital Jose De San Martin Buenos Aires Argentina Allo / Auto

Alexander Fleming Institute Buenos Aires Argentina Allo / Auto

Fundaleu-Angelica Ocampo Buenos Aires Argentina Allo / Auto

Hospital Priv De Onc-Buenos Aries Buenos Aires Argentina Allo / Auto

Hospital De Ninas La Plata Buenos Aires Argentina Allo / Auto

Hospital Universitario Austral Buenos Aires Argentina Allo / Auto

Hospital Priv Cordoba Cordoba Argentina Allo / Auto

Sanatorio Allende Cordoba Argentina Allo / Auto

Hanson Center Cancer Research Adelaide Australia Allo only

Box Hill Hospital Box Hill Australia Auto only

Royal Price Alfred Hospital Camperdown Australia Allo / Auto

St Vincent's Hospital Darlinghurst Australia Allo only

Royal Brisbane & Women's Hospital Herston Australia Allo / Auto

Royal Brisbane Hospital Herston Australia Allo / Auto

Alfred Hospital Melbourne Australia Allo / Auto

Royal Children's Hospital Parkville Australia Allo only

Royal Perth Hospital Perth Australia Allo only

Princess Margaret Hospital Perth Australia Allo only

Sydney Children's Hospital Randwick Australia Allo only

Royal Melbourne Hospital Victoria Australia Allo only

Calvary Mater Newcastle Hospital Waratah Australia Allo / Auto

Westmead Hospital Westmead Australia Allo only

Children's Hospital at Westmead Westmead Australia Allo only

University of Graz Graz Austria Allo only

Ludwig Blotzmann Institute Vienna Austria Auto only

Medical University of Vienna Vienna Austria Allo only

Hospital Az Sint-Jan Brugge Belgium Allo only

Children's University Hospital Bruxelles Belgium Allo / Auto

Cliniques Universitaires St-Luc Bruxelles Belgium Allo only

University Hospital Antwerp Edegem Belgium Allo only

University Hospital Gasthuisberg Leuven Belgium Allo only

University De Liege Liege Belgium Allo only

Hospital De Barretos Barretos Brazil Allo only

Universidade Fedearl de Mina Gerasis Belo Horizonte Brazil Allo / Auto

University Estadual De Campinas Campinas Brazil Allo / Auto

Hospital De Clinicas Curitiba Curitiba Brazil Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Transplant Center Name City Country Transplants 

Performed

Hospital Amaral Carvalho Jau Brazil Allo / Auto

Hospital De Clin De Porto Alegre Porto Alegre Brazil Allo / Auto

Hospital De Porto Alegre Porto Alegre Brazil Allo / Auto

Real Hospital Portugues Recife Brazil Allo / Auto

Centro de Transplante de Medula Ossea Recife Pernambu Brazil Allo / Auto

Universidade de Sao Paulo Ribeirao Preto Brazil Allo / Auto

Instituto Nacional de Cancer Rio de Janeiro Brazil Allo / Auto

University Federal Rio De Janeiro Rio de Janeiro Brazil Allo / Auto

Santa Casa Medical School-Sao Paulo Sao Paolo Brazil Allo only

De Sao Jose De Campos Sao Paolo Brazil Auto only

Instituto da Crianca-Universidade de Sao Paulo Sao Paolo Brazil Allo / Auto

Instituto De Oncologia Pediatrica Sao Paolo Brazil Allo / Auto

Albert Einstein Hospital Sao Paolo Brazil Allo / Auto

Universidad do Sao Paulo Sao Paolo Brazil Allo / Auto

Hospital Sirio Libanes Sao Paolo Brazil Allo / Auto

Tom Baker Cancer Center Calgary Canada Allo / Auto

Alberta Children's Hospital Calgary Canada Allo / Auto

Queen Elizabeth II Health Sciences Center Halifax Canada Allo / Auto

Hamilton Henderson Science Corporation Hamilton Canada Allo / Auto

Kingston General Hospital Kingston Canada Auto only

London Health Science Center London Canada Allo / Auto

Montreal Children's Hospital Montreal Canada Allo / Auto

Mcgill University Health Center Montreal Canada Allo / Auto

Maisonneuve-Rosemont Hospital Montreal Canada Allo only

Centre Hospitalier Montreal Canada Allo / Auto

Ottawa General Hospital Ottawa Canada Auto only

Hotel-Dieu De Quebec Quebec Canada Allo / Auto

CHA-Enfant-Jesus Hospital Quebec City Canada Allo / Auto

St John's Health Sciences Center St. John's Canada Auto only

RCP-Sudbury Regional Hospital Sudbury Canada Auto only

Princess Margaret Hospital Toronto Canada Auto only

Princess Margaret Hospital Toronto Canada Allo only

British Columbia Children's Hospital Vancouver Canada Allo / Auto

Cancer Care Manitoba Winnipeg Canada Allo / Auto

Clinica Santa Maria Providencia Chile Allo / Auto

Peking University People's Hospital Beijing China Allo only

Guangzhou First Municipal People's Hospital Guangzhou China Allo / Auto

The First Affiliated Hospital HangZhou China Allo / Auto

Instituto de Transplante de Medula Osea de la 

Costa Caribe

Barranquilla Colombia Allo / Auto

Fundacion HOMI Hospital de la Misericordia Bogota Colombia Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

65

Transplant Center Name City Country Transplants 

Performed

Instituto de Cancerologia Medellin Colombia Allo / Auto

Hospital Pable Tobon Uribe Medellin Colombia Allo / Auto

Hospital Mexico San Jose Costa Rica Allo only

Charles University Hospital Pilsen Czech 

Republic

Allo / Auto

Institute of Hem-Blood Transfusion Praha Czech 

Republic

Allo only

Teaching Hospital Motol Praha Czech 

Republic

Allo only

Rigshospitalet-Copenhagen Copenhagen Denmark Allo only

NCI Cairo University Cairo Egypt Allo only

Helsinki University Central Hospital Helsinki Finland Allo only

Turku University Turku Finland Allo only

Centre Hospitalier Regional University D'Angers Angers France Allo only

Hopital Jean Minjoz Besancon France Allo only

Hospital A Michallon, CHU de Grenoble Grenoble France Allo only

Hopital Claude Huriez, Lille Lille France Allo only

Hospital Edouard Herriot Lyon France Allo only

Hopital Debrousse Lyon France Allo / Auto

Institute Paoli Calmettes Marseille France Allo only

Hotel Dieu Paris France Allo only

Hopital Robert Debre Paris France Allo only

Hospital Saint Louis Paris France Allo only

Hospital Jean Bernard Poitiers France Allo only

University Hospital Charite - Virchow Berlin Germany Allo / Auto

University Hospital Charite Kinderklinik - Virchow Berlin Germany Allo only

Universitaetsklinikum Carl Gustav Carus Dresden Germany Allo / Auto

Heinrich-Heine University Dusseldorf Germany Allo only

University Hospital of Essen Essen Germany Allo / Auto

University Children's Hospital Frankfurt Frankfurt Germany Allo / Auto

Frieburg University Medical Center Freiburg Germany Allo only

Ernst Moritz Arndt Universitat, Greifswald Greifswald Germany Allo only

Martin-Luther-University Halle-Wittenberg Halle Germany Allo only

Universitaets Klinikum Hamburg Hamburg Germany Allo only

Medical School Of Hannover Hannover Germany Allo only

University of Heidelberg Heidelberg Germany Allo only

Clinic for Bone Marrow Transplantation Idar-Oberstein Germany Allo / Auto

Christian Albrechts University Kiel Germany Allo / Auto

Leipzig University Bone Marrow Transplant Leipzig Germany Allo only

University Hospital Mainz Mainz Germany Allo / Auto

University of Munich Munich Germany Allo only
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

66

Transplant Center Name City Country Transplants 

Performed

Klinikum der Universitaet Regensburg Regensburg Germany Allo only

Universitats Klinikum Tubingen Tubingen Germany Allo only

Universitats-Kinderlinik Tubingen Tubingen Germany Allo only

Universitat Ulm - adults Ulm Germany Allo only

Universitat Ulm - peds Ulm Germany Allo only

Deutsche Klinik fr Diagnostik Wiesbaden Germany Allo only

University Hospital of Patras, Patras University 

Medical Ctr

Rio Patras Greece Allo / Auto

University of Hong Kong Hong Kong Hong Kong Allo / Auto

Chinese University of Hong Kong Shatin Hong Kong Allo only

Gujrat Cancer & Research Institute Ahmedabad India Allo / Auto

Sir Ganga Ram Hospital Dehli India Allo / Auto

Christian Medical College, Ludhiana Ludhiana India Allo / Auto

Tata Memorial Hospital Mumbai India Allo only

All India Institute of Medical Science New Delhi India Allo only

Institute Rotary Cancer Hospital New Delhi India Allo / Auto

Christian Medical College Hospital Vellore India Allo only

Shariati General Hospital Tehran Iran Allo / Auto

St James Hospital Dublin Ireland Allo only

Rambam Medical Center, Haifa Israel Allo / Auto

Haddasah University Hospital Jerusalem Israel Allo only

Schneider Children's Medical Center Petach Tikva Israel Allo only

Chaim Sheba Medical Center Tel-Hashomer Israel Allo / Auto

Chaim Sheba Medical Center Tel-Hashomer Israel Allo only

Instituto di Ematologia e Oncologia Medica 

Seragnoli

Bologna Italy Allo only

University Bologna-Pediatrics Bologna Italy Allo / Auto

Spedali Civili di Brescia Brescia Italy Allo / Auto

Ospedale Ferrarotto Catania Italy Allo only

Universita di Firenze Firenze Italy Allo / Auto

Ospedale Civile-Pesaro Pesaro Italy Allo / Auto

Ospedale Civile Pescara Italy Allo only

University La Sapienza Rome Italy Allo only

Universita Cattolica Sacro Cuore Rome Italy Allo / Auto

St Eugenio Hospital Rome Italy Allo only

Ospedale Molinette Torino Italy Allo only

Udine University Hospital Udine Italy Allo only

Kyushu University Hospital Fukuoka Japan Allo / Auto

Tokai University Hospital Isehara Japan Allo only

Hyogo College of Medicine Nishinomiya Japan Allo / Auto

Osaka City University Osaka Japan Allo only
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

67

Transplant Center Name City Country Transplants 

Performed

Jichi Medical School Tochigi Japan Allo / Auto

National Cancer Center Hospital Tokyo Japan Allo only

The Catholic University of Korea Seoul Korea 

(South)

Allo / Auto

Asan Medical Center Seoul Korea 

(South)

Allo only

Samsung Medical Center Seoul Korea 

(South)

Allo only

Hamid Al-Essa Multi-Organ Transplant Center Safat Kuwait Auto only

American University of Beirut Beirut Lebanon Auto only

University of Malaya Medical Center Kuala Lumpur Malaysia Allo only

The American British Cowdrey Medical Center Mexico City Mexico Allo / Auto

Institute Nacional de Pediatria Coyoacan Mexico Allo / Auto

Hospital Angeles de las Lomas Huixquilucan Mexico Allo / Auto

Hospital Especialidades Centro Medico Mexico D.F. Mexico Allo / Auto

Hospital San Jose-Tec De Monterrey Monterrey Mexico Allo / Auto

Hospital Universitario Monterrey Mexico Allo / Auto

Centro de Hematologia y Medicina Interna. Clinica 

Ruiz de Puebla

Puebla Mexico Allo / Auto

Academic Medical Center Amsterdam Netherlands Allo / Auto

Leiden University Medical Center Leiden Netherlands Allo only

Academic Hospital Maastricht Maastricht Netherlands Allo only

University Hospital of Nijmegen Nijmegen Netherlands Allo only

Dr Daniel Den Hoed Cancer Center Rotterdam Netherlands Allo only

Auckland City Hospital Auckland New 

Zealand

Allo only

Starship Children's Hospital Auckland New 

Zealand

Allo only

Christchurch Hospital Christchurch New 

Zealand

Allo only

Wellington Blood and Cancer Centre Wellington New 

Zealand

Allo only

Rikshospital Oslo Norway Allo only

Aga Khan University Hospital Karachi Pakistan Allo / Auto

Hill Park Hospital National Institute of Blood 

Diseases & Bone Marrow Transplantation

Karachi Pakistan Allo only

Hospital Rebagliati Lima Peru Allo / Auto

Silesian Medical Academy Katowice Poland Allo only

Poznan University of Medical Sciences Poznan Poland Allo only

K Marcinkowski University of Medical Science Poznan Poland Allo only

Medical University of Warsaw Warsaw Poland Allo only
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

68

Transplant Center Name City Country Transplants 

Performed

Lower-Silesian Center for Cellular Transplantation 

and National Bone Marrow Donor Registry

Wroclaw Poland Allo only

Institute Portugues de Oncologia - Lisbon Lisbon Portugal Allo only

Russian Central Children's Hospital Moscow Russian 

Fed.

Allo only

Dr. Soliman Fakeeh Hospital Jeddah Saudi 

Arabia

Allo / Auto

Riyadh Military Hospital (RKH) Riyadh Saudi 

Arabia

Allo only

King Faisal Specialist Hospital & Research Center Riyadh Saudi 

Arabia

Allo only

King Faisal Specialist Hospital-Pediatrics Riyadh Saudi 

Arabia

Allo only

National University Hospital Singapore Singapore Allo / Auto

Singapore General Hospital Singapore Singapore Allo only

National University Hospital, Singapore Singapore Singapore Allo only

Slovak Medical University Bratislava Slovak 

Republic

Allo only

Constantiaberg Medi-Clinic Cape Town South Africa Allo / Auto

University of Cape Town Leukemia Center Cape Town South Africa Allo only

University of Witwatersrand Parktown South Africa Allo / Auto

University Barcelona Barcelona Spain Allo only

Hospital Infantil Vall d'Hebron Barcelona Spain Allo / Auto

Institut Catala d'Oncologia-IDIBELL Barcelona Spain Allo / Auto

Hospital Santa Creui Sant Pau Barcelona Spain Allo / Auto

Hospital Puerta Hierro Madrid Spain Allo only

Hospital Infantil Universitario Nino Jesus Madrid Spain Allo only

Gregorio Mara$on University General Hospital Madrid Spain Allo / Auto

Hospital Infantil La Paz Madrid Spain Allo / Auto

Son Dureta Hospital Palma Mallorca Spain Allo only

Hospital Universitario La Fe Valencia Spain Allo only

Sahlgrenska University Hospital Goteborg Sweden Allo only

Lund University Hospital Lund Sweden Allo only

Karolinska University Hospital Stockholm Sweden Allo only

University Hospital - Uppsala Uppsala Sweden Allo only

Basel Kantonsspital Basel Switzerland Allo only

Geneva University Hospital Geneva Switzerland Allo only

University Hospital-Zurich Zurich Switzerland Allo only

Taipei Veterans General Hospital Taipei Taiwan Allo only

Chang Gung Children's Hospital Taoyuan Taiwan Allo / Auto

Ankara University Faculty of Medicine Ankara Turkey Allo only

Hacettepe University Ankara Turkey Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

69

Transplant Center Name City Country Transplants 

Performed

Gulhane Military Medical Academy Ankara Turkey Allo / Auto

Istanbul Medical Faculty Bone Marrow Bank Istanbul Turkey Allo / Auto

Yeditepe University Hospital Istanbul Turkey Allo / Auto

University of Erciyes Medical School Kayseri Turkey Allo / Auto

Birmingham Heartlands Hospital Birmingham UK Allo only

Birmingham Children's Hospital Birmingham UK Allo only

Queen Elizabeth Hospital-Birmingham Birmingham UK Allo only

Bristol Children's Hospital Bristol UK Allo only

Addenbrooke's NHS Trust Cambridge UK Allo only

Western General Hospitals NHS Trust Edinburgh UK Allo only

Beatson West of Scotland Cancer Centre Glasgow UK Allo only

Royal Hospital for Sick Children Glasgow UK Allo only

St James University Hospital Leeds UK Allo only

London Clinic London UK Allo only

Royal Free Hospital London UK Allo only

Imperial College School of Medicine London UK Allo only

Great Ormond Street Hospital London UK Allo only

St George's Hospital London UK Allo only

Imperial College- St Mary's Hosptial London UK Allo only

Royal Victorian Hospital-Newcastle Newcastle UK Allo only

ABM University, NHS Trust, Swansea Swansea UK Auto only

British Hospital Montevideo Uruguay Allo / Auto

Centro IMPASA de Trasplante de Medula Ossea Montevideo Uruguay Allo / Auto

Unidad de Transplante de Medula Osea 

Pediatrica

Montevideo Uruguay Allo / Auto

Hospital de Clinicas Caracas Caracas Venezuela Allo / Auto

Ciudad Hospitalaraia Dr Enrique Tejera Valencia Venezuela Allo / Auto
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

70

Appendix D: Related Web Links 

Transplant Resources (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/index.html) 

Understanding Transplant as a Treatment Option (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/Understanding_Tx/index.html) 

Planning for a Bone Marrow Transplant (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/Planning/index.html) 

Searching for a Marrow Donor or Cord Blood Unit (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/Searching/index.html) 

Patient Support Resources (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/Patient_Support/index.html) 

Physician Resources (http://bloodcell.transplant.hrsa.gov/TRANSPLANT/Physician_Resources/index.html) 

Donor Information (http://bloodcell.transplant.hrsa.gov/DONOR/index.html) 

The Need for More Marrow Donors http://bloodcell.transplant.hrsa.gov/DONOR/Need_for_Donors/index.html) 

Joining the Registry (http://bloodcell.transplant.hrsa.gov/DONOR/Joining/index.html) 

Donating Marrow (http://bloodcell.transplant.hrsa.gov/DONOR/Donating/index.html) 

Cord Blood Information (http://bloodcell.transplant.hrsa.gov/CORD/index.html) 

The Need for More Cord Blood Donations (http://bloodcell.transplant.hrsa.gov/CORD/The_Need/index.html) 

Options for Umbilical Cord Blood Banking and Donation (http://bloodcell.transplant.hrsa.gov/CORD/Options/index.html) 

Research, Data, and Outcomes (http://bloodcell.transplant.hrsa.gov/RESEARCH/index.html) 

Transplant Outcomes and Data (http://bloodcell.transplant.hrsa.gov/RESEARCH/Transplant_Data/index.html) 

Donor Registry Data (http://bloodcell.transplant.hrsa.gov/RESEARCH/Registry_Data/index.html) 

Biennial Report (http://bloodcell.transplant.hrsa.gov/RESEARCH/Biennial_Report/index.html) 

Cord Blood Units for Research (http://bloodcell.transplant.hrsa.gov/RESEARCH/CBU_for_Research/index.html) 

About the Program (http://bloodcell.transplant.hrsa.gov/ABOUT/index.html) 

Advisory Council on Blood Stem Cell Transplantation (http://bloodcell.transplant.hrsa.gov/ABOUT/Advisory_Council/index.html) 

Legislation and Contracts (http://bloodcell.transplant.hrsa.gov/ABOUT/Legislation_and_Contracts/index.html) 

Program Contractors (http://bloodcell.transplant.hrsa.gov/ABOUT/Contractors/index.html) 

Program Assessments (http://bloodcell.transplant.hrsa.gov/ABOUT/Program_Assessments/index.html) 

Radiation Injury Treatment Network (http://bloodcell.transplant.hrsa.gov/ABOUT/RITN/index.html) 

Current Use and Outcomes of HCT (http://www.cibmtr.org/SERVICES/Observational_Research/Summary_Slides/index.html) 

Information Request Form (http://www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/pages/index.aspx) 

U.S. Transplant Data: outcomes (http://bloodcell.transplant.hrsa.gov/RESEARCH/Transplant_Data/US_Tx_Data/index.html) 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

71

Appendix E: Map of Worldwide Transplant Centers Providing Data to NMDP and CIBMTR 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

72

Appendix F: CIBMTR Publications 

2008 CIBMTR Publications 

Lee SJ, Kamani N, Confer DL. Principles and tools for selection of umbilical cord blood and 

unrelated adult donor grafts. Biol Blood Marrow Transplant 14:112-119, 2008 

Kamani N, Spellman S, Hurley CK, Barker JN, Smith FO, Oudshoorn M, Bray R, Smith A, 

Williams TM, Logan B, Eapen M, Anasetti C, Setterholm M, Confer DL. State of the art review: 

HLA matching and outcome of unrelated donor umbilical cord blood transplants. Biol Blood 

Marrow Transplant 14:1-6, 2008 

Schlenk RF, Pasquini MC, Pérez WS, Zhang M-J, Krauter J, Antin JH, Bashey A, Bolwell BJ, 

Büchner T, Cahn J-Y, Cairo MS, Copelan EA, Cutler CS, Döhner H, Gale RP, Ilhan O, Lazarus 

HM, Liesveld JL, Litzow MR, Marks DI, Maziarz RT, McCarthy PL, Nimer SD, Sierra J, Tallman 

MS, Weisdorf DJ, Horowitz MM, Arnold Ganser A. HLA-identical sibling allogeneic transplants 

versus chemotherapy in acute myelogenous leukemia with t(8;21) in first complete remission: 

collaborative study between the German AML Intergroup and CIBMTR. Biol Blood Marrow 

Transplant 14:187-196, 2008 

Hari P, Carreras J, Zhang MJ, Gale RP, Bolwell BJ, Bredeson CN, Burns LJ, Cairo M, Freytes 

CO, Goldstein SC, Hale GA, Inwards DJ, LeMaistre CF, Maharaj D, Marks DI, Schouten HC, 

Slavin S, Vose JM, Lazarus HM, van Besien K. Allogeneic transplants in follicular lymphoma: 

higher risk of disease progression after reduced-intensity compared to myeloablative 

conditioning. Biol Blood Marrow Transplant 14:236-245, 2008 

Eapen M, Zhang MJ, Devidas M, Raetz E, Barredo JC, Ritchey AK, Godder K, Grupp S, Lewis 

VA, Malloy K, Carroll WL, Davies SM, Camitta BM. Outcomes after HLA-matched sibling 

transplantation or chemotherapy in children with acute lymphoblastic leukemia in a second 

remission after an isolated central nervous system relapse: a collaborative study of the 

Children’s Oncology Group and the Center for International Blood and Marrow Transplant 

Research. Leukemia 22:281-286, 2008 

Hou L, Steiner NK, Chen M, Belle I, Kubit AL, Ng J, Hurley CK. Limited allelic diversity of 

stimulatory two-domain killer cell immunoglobulin-like receptors. Hum Immunol 69:174–178, 

2008

Scheike TH, Zhang MJ, Gerds TA. Predicting cumulative incidence probability by direct binomial 

regression. Biometrika 95:205-220, 2008 

Nietfeld JJ, Pasquini MC, Logan BR, Verter F, Horowitz MM. Lifetime probabilities of 

hematopoietic stem cell transplantation in the US: implications for umbilical cord blood storage. 

Biol Blood Marrow Transplant 14:316-322, 2008 

Ueno NT, Rizzo JD, Demirer T, Cheng YC, Hegenbart U, Zhang MJ, Bregni M, Carella A, Blaise 

D, Bashey A, Bitran JD, Bolwell BJ, Elfenbein GJ, MD, Fields KK, Freytes CO, Gale RP, 

Lazarus HM, Champlin RE, Stiff PJ, Niederwieser D. Allogeneic hematopoietic cell 

transplantation for metastatic breast cancer. Bone Marrow Transplant 41:537-545, 2008 

Klein JP, Gerster M, Andersen, PK, Tarima S, Perme MP. SAS and R functions to compute 

pseudo-values for censored data regression. Comput Methods Programs Biomed 89:289-300, 

2008

Howard DH, Meltzer D, Kollman C, Maiers M, Logan B, Gragert L, Setterholm M, Horowitz MM. 

Use of cost-effectiveness analysis to determine inventory size for a national cord blood bank. 

Med Decis Making 28:243-253., 2008 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

73

Williams TM, Winden T, Setterholm M, Vierra-Green CA, Spellman S, Flesch S, Awdeh Z, 

Baxter-Lowe LA, Begovich AB, Fernandez-Vina M, Hegland J, Hurley CK, Johnson D, Noreen 

H, Salazar M, Schmeckpeper B, Yunis EJ. Strategies and technical challenges in allele level 

Class II typing in 2578 bone marrow transplantation donor-recipient pairs. Hum Immunol 

69:227–234, 2008 

Bishop MR, Logan BR, Gandham S, Bolwell BJ, Cahn J-Y, Lazarus HM, Litzow MR, Marks DI, 

Wiernik PH, McCarthy PL, Russell JA, Miller C, Sierra J, Milone G, Keating A, Loberiza, FR, Jr, 

Giralt SA, Horowitz MM, Weisdorf DJ. Long-term outcomes of adults with acute lymphoblastic 

leukemia after autologous or unrelated donor bone marrow transplantation: a comparative 

analysis by the National Marrow Donor Program and Center for International Blood and Marrow 

Transplant Research. Bone Marrow Transplant 41:635-642, 2008 

Perez-Albuerne ED, Eapen M, Klein JP, Gross TG, Lipton JM, Baker KS, Woolfrey AE, Kamani 

NR. Outcome of unrelated donor stem cell transplantation for children with severe Aplastic 

anemia. Br J Haematol 141:216-223., 2008 

Belle I, Hou L, Chen M, Steiner NK, Ng J, Hurley CK. Investigation of killer cell immunoglobulinlike receptor gene diversity in KIR3DL1 and KIR3DS1 in a transplant population. Tissue 

Antigens 71:434–439, 2008 

Gardner SL, Carreras J, Boudreau C, Camitta BM, Adams RH, Chen AR, Davies SM, Edwards 

JR, Grovas AC, Hale GA, Lazarus HM, Arora M, Stiff PJ, Eapen M. Myeloablative therapy with 

autologous stem cell rescue for patients with Ewing sarcoma. Bone Marrow Transplant 41:867-

872, 2008 

Lee SJ, Joffe S, Artz AS, Champlin RE, Davies SM, Jagasia M, Kernan NA, Loberiza Jr. FR, 

Soiffer RJ, Eapen M. Individual physician practice variation in hematopoietic cell transplantation. 

J Clin Oncol 26:2162–2170, 2008 

Mulrooney TJ, Hou L, Steiner NK, Chen M, Belle I, Ng J, Hurley CK. Promoter variants of 

KIR2DL5 add to diversity and may impact gene expression. Immunogenetics 60:287–294, 2008 

Weinstock DM, Case Jr. C, Bader JL, Chao NJ, Coleman CN, Hatchett RJ, Weisdorf DJ, Confer 

DL. Radiological and nuclear events: contingency planning for hematologist/oncologists. Blood 

111:5440–5445, 2008 

Weinstock DM, Case, Jr. C, Confer DL. Response: radiologic and nuclear events. Blood 

111:5758–5759, 2008 

Nietfeld JJ, Pasquini MC, Logan BR, Verter F, Horowitz MM. On the probability of using cord 

blood. Biol Blood Marrow Transplant 14:724-725, 2008 

Marks DI, Pérez WS, He W, Zhang M-J, Bishop MR, Bolwell BJ, Bredeson CN, Copelan EA, 

Gale RP, Gupta V, Hale GA, Isola LM, Jakubowsi AA, Keating A, Klumpp TR, Lazarus HM, 

Liesveld JL, Maziarz RT, McCarthy PL, Sabloff M, Schiller G, Sierra J, Tallman MS, Waller EK, 

Wiernik PH, Weisdorf DJ. Unrelated donor transplants in adults with Philadelphia-negative acute 

lymphoblastic leukemia in first complete remission. Blood 112:426-434, 2008 

Weisdorf D, Spellman S, Haagenson M, Horowitz M, Lee S, Anasetti C, Setterholm M, Drexler 

R, Maiers M, King R, Confer D, Klein J. Classification of HLA-matching for retrospective 

analysis of unrelated donor transplantation: revised definitions to predict survival. Biol Blood 

Marrow Transplant 14:748-758, 2008 

Confer D, Robinett P The US National Marrow Donor Program role in unrelated donor 

hematopoietic cell transplantation. Bone Marrow Transplant 42:S3-S5, 2008 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

74

Smith SM, van Besien K, Carreras J, Bashey A, Cairo MS, Freytes CO, Gale RP, Hale GA, 

Hayes-Lattin B, Holmberg LA, Keating A, Maziarz RT, McCarthy PL, Navarro WH, Pavlovsky S, 

Schouten HC, Seftel M, Wiernik PH, Vose JM, Lazarus, HM, Hari P. Second autologous stem 

cell transplantation for relapsed lymphoma after a prior autologous transplant Biol Blood Marrow 

Transplant 14:904-912, 2008 

Horowitz MM. The role of registries in facilitating clinical research in BMT: examples from the 

Center for International Blood and Marrow Transplant Research. Bone Marrow Transplant 

42:S1-S2, 2008 

Baker KS, Filipovich AH, Gross TG, Grossman WJ, Hale GA, Hayashi RJ, Kamani NR, Kurian 

S, Kapoor N Ringdén O, Eapen M. Unrelated donor hematopoietic cell transplantation for 

hemaophagocytic lymphohistiocytosis. Bone Marrow Transplant 42:175-180, 2008 

Levine JE, Barrett AJ, Zhang M-J, Pulsipher MA, Bunin N, Fort J, Loberiza FR, Porter D, Giralt 

S, Drobyski W, Ringdén O, Horowitz MM, Collins R. Donor leukocyte infusions to treat 

hematologic malignancy relapse following allogeneic stem cell transplantation in a pediatric 

population. Bone Marrow Transplant 42:201-205, 2008 

Ballen KK, King RJ, Chitphakdithai P, Bolan Jr. CD, Agura E, Hartzman RJ, Kernan NA The 

National Marrow Donor Program 20 years of unrelated donor hematopoietic cell transplantation. 

Blood Marrow Transplant 14:2–7, 2008 

Bolan CD, Hartzman RJ, Perry EH, Trainor L, Miller J, Miller R, Hanley L, Chitphakdithai P, King 

RJ Donation activities and product integrity in unrelated donor allogeneic hematopoietic 

transplantation: experience of the National Marrow Donor Program. Biol Blood Marrow 

Transplant 14:23–28, 2008 

Bray RA, Hurley CK, Kamani NR, Woolfrey A, Müller C, Spellman S, Setterholm M, Confer DL. 

National Marrow Donor Program HLA matching guidelines for unrelated adult donor 

hematopoietic cell transplants. Biol Blood Marrow Transplant 14:45–53, 2008 

MacMillan ML, Davies SM, Nelson GO, Chitphakdithai P, Confer DL, King RJ, Kernan NA 

Twenty years of unrelated donor bone marrow transplantation for pediatric acute leukemia 

facilitated by the National Marrow Donor Program. Biol Blood Marrow Transplant14:16–22, 2008 

Miller JP, Perry EH, Price TH, Bolan Jr. CD, Karanes C, Boyd TM, Chitphakdithai P, King RJ. 

Recovery and safety profiles of marrow and PBSC donors: experience of the National Marrow 

Donor Program. Biol Blood Marrow Transplant 14:29–36, 2008 

Spellman S, Setterholm M, Maiers M, Noreen H, Oudshoorn M, Fernandez-Viña M, Petersdorf 

E, Bray R, Hartzman RJ, Ng J, Hurley CK. Advances in the selection of HLA-compatible donors: 

refinements in HLA typing and matching over the first 20 years of the National Marrow Donor 

Program Registry. Biol Blood Marrow Transplant 14:37–44, 2008 

Bredeson CN, Zhang MJ, Agovi MA, Bacigalupo A, Bahlis NJ, Ballen K, Brown C, Chaudhry 

MA, Horowitz MM, Kurian S, Quinlan D, Muehlenbien CE, Russell JA, Savoie L, Rizzo JD, 

Stewart DA. Outcomes following HCT using Fludarabine, Busulfan and Thymoglobulin: A 

matched comparison to allogeneic transplants conditioned with Busulfan and 

Cyclophosphamide. Biol Blood Marrow Transplant 14:993-1003, 2008 

Duquesnoy R, Spellman S, Haagenson M, Wang T, Horowitz MM, Oudshoorn M. HLA 

matchmaker-defined triplet matching is not associated with better survival rates of patients with 

class I HLA allele mismatched hematopoietic cell transplants from unrelated donors. Biol Blood 

Marrow Transplant 14:1064-1071, 2008 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

75

Logan BR, Klein JP, Zhang MJ. Comparing treatments in the presence of crossing survival 

curves: An application to bone marrow transplantation. Biometrics 64:733-740, 2008 

Bunin NJ, Davies SM, Aplenc R, Camitta BM, DeSantes KB, Goyal RK, Kapoor N, Kernan NA, 

Rosenthal J, Smith FO, Eapen M. Unrelated donor bone marrow transplantation for children 

with acute myeloid leukemia beyond first remission or refractory to chemotherapy. J Clin Oncol 

26:4326-4332, 2008 

Karanes C, Nelson GO, Chitphakdithai P, Agura E, Ballen KK, Bolan CD, Porter DL, Uberti JP, 

King RJ, Confer DL Twenty years of unrelated donor hematopoietic cell transplantation for adult 

recipients facilitated by the National Marrow Donor Program. Biol Blood Marrow Transplant 

14:8–15, 2008 

Bashey A, Pérez WS, Zhang M-J, Anderson KC, Ballen K, Berenson JR, Fonseca R, Freytes 

CO , Gale RP, Gibson J, Giralt SA, Kyle RA, Lazarus HM, Maharaj D, McCarthy PL, Milone GA, 

Nimer S, Pavlovsky S, Reece DE, Schiller G, Vesole DH, Hari P. Comparison of twin and 

autologous transplants for multiple myeloma Biol Blood Marrow Transplant 14:1118-1124, 2008 

Kumar S, Pérez WS, Zhang M-J, Ballen K, Bashey A, Bik To L, Bredeson CN, Cairo MS, 

Elfenbein GJ, Freytes CO, Gale RP, Gibson J, Kyle RA, Lacy MQ, Lazarus HM, McCarthy PL, 

Milone GA, Moreb JA, Pavlovsky S, Reece DE, Vesole DH, Wiernik PH, Hari P. Comparable 

outcomes in non-secretory and secretory multiple myeloma after autologous stem cell 

transplantation. Biol Blood Marrow Transplant 14:1134-1140, 2008 

Pasquini R, Carreras, J, Pasquini MC, Camitta BM, Fasth AL, Hale GA, Harris RE, Marsh JC, 

Robinson AJ, Zhang M-J, Eapen M, Wagner JE. HLA-matched sibling hematopoietic stem cell 

transplantation for Fanconi anemia: comparison of irradiation and nonirradiation containing 

conditioning regimens. Biol Blood Marrow Transplant 14:1141-1147, 2008 

Lee SJ, Kukreja M, Wang T, Giralt SA, Szer J, Arora M, Woolfrey AE, Cervantes F, Champlin 

RE, Gale RP, Halter J, Keating A, Marks DI, McCarthy PL, Olavarria E, Stadtmauer EA, 

Abecasis M, Gupta V, Khoury HJ, George B, Hale GA, Liesveld JL, Rizzieri DA, Antin JH, 

Bolwell BJ, Carabasi MH, Copelan E, Ilhan O, Litzow MR, Schouten HC, Zander AR, Horowitz 

MM, Maziarz RT. Impact of prior imatinib mesylate on the outcome of hematopoietic cell 

transplantation for chronic myeloid leukemia. Blood 112:3500-3507, 2008 

Lee SJ, Astigarraga CC, Eapen M, Artz AS, Davies SM, Champlin R, Jagasia M, Kernan NA, 

Loberiza FR, Jr, Bevans M, Soiffer RJ, Joffe S. Variation in supportive care practices in 

hematopoietic cell transplantation. Biol Blood Marrow Transplant 14:1231-1238, 2008 

Murphey E. Helping survivors thrive after marrow and cord blood transplants. Coping 2008; 

Nov/Dec:18, 2008 

Cutler C, Stevenson K, Kim HT, Richardson P, Ho VT, Linden E, Revta C, Ebert R, Warren D, 

Choi S, Koreth J, Armand P, Alyea E, Carter S, Horowitz MM, Antin JH, Soiffer R. Sirolimus is 

associated with veno-occlusive disease of the liver after myeloablative allogeneic stem cell 

transplantation. Blood 112:4425-4431, 2008 

Eapen M, Rocha, V. Principles and analysis of hematopoietic cell transplantation: the 

physician’s eye-view. Lifetime Data Anal 14:379-388, 2008 

Logan BR, Nelson GO, Klein JP. Analyzing center specific outcomes in hematopoietic cell 

transplantation. Lifetime Data Anal. 14:389-404, 2008 

Liu L, Logan B, Klein JP. Inference for current leukemia free survival. Lifetime Data Anal 

14:432-446, 2008 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

76

Scheike TH and Zhang M-J. Flexible competing risks regression modelling and goodness-of-fit. 

Lifetime Data Anal 14:464-483, 2008 

Lazarus HM, Carreras J, Boudreau C, Loberiza FR, Jr, Armitage JO, Bolwell BJ, Freytes CO, 

Gale RP, Gibson J, Hale GA, Inwards DJ, LeMaistre CF, Maharaj D, Marks DI, Miller AM, 

Pavlovsky S, Schouten HC, van Besien K, Vose JM, Rizzo JD. Influence of age and histology 

on outcome in adult non-hodgkin’s lymphoma patients undergoing autologous HCT: a report 

from the Center for International Blood & Marrow Transplant Research (CIBMTR). Biol Blood 

Marrow Transplant 14:1323-1333, 2008 

Dehn J, Arora M, Spellman S, Setterholm M, Horowitz M, Confer D, Weisdorf D. Unrelated 

donor hematopoietic cell transplantation: factors associated with a better HLA match. Biol Blood 

Marrow Transplant 14:1334-1340, 2008 

Logan B, Leifer E, Bredeson C, Horowitz M, Ewell M, Carter S, Geller N. Use of biological 

assignment in hematopoietic stem cell transplantation clinical trials. Clin Trials 5:607-616, 2008 

Majhail NS. Mobilization and Transplantation, Old and new cancers after hematopoietic-cell 

transplantation. Hematology 2008, American Society of Hematology, Education Program Book, 

San Francisco, CA, December 6-9, (Gewirtz AM, Muchmore EA, Burns LJ, eds.), American 

Society of Hematology, Washington, D.C., pp 142-149., 2008 

Hahn T, McCarthy PL Jr, Zhang MJ, Wang D, Arora M, Frangoul H, Gale RP, Hale GA, Horan J, 

Isola L, Maziarz RT, van Rood JJ, Gupta V, Halter J, Reddy V, Tiberghien P, Litzow M, Anasetti 

C, Pavletic S, Ringdén O. Risk factors for acute graft-versus-host disease after human 

leukocyte antigen-identical sibling transplants for adults with leukemia J Clin Oncol 26:5728-

5734, 2008 

Klein JP, Zhang MJ Guest editor introduction to issue on transplant statistics Lifetime Data 

Analysis, 14:377-378, 2008 

Bajorunaite, R and Klein, JP Comparing failure probabilities in the presence of competing risks J 

of Statistical Computation and Simulation 78:951-66, 2008 

Klein, JP and da Silva Direct Regression models for survival parameters basedf on 

pseudovalues Frontiers of Applied and Computational Mathematics (Blackmore, D., Boses, A 

and Petropoulos P, eds) World Scientific, Hackensack, NJ 162-171, 2008 

Zhang MJ, Zhang X, Scheike TH. Modeling Cumulative Incidence Function for Competing Risks 

Data. Expert Review of Clinical Pharmacology, 1:391-400, 2008 

Zhang MJ, Fine J. Summarizing Differences in Cumulative Incidence Functions. Statistics in 

Medicine 27:4939–4949, 2008 

2009 CIBMTR Publications 

Devetten MP, Hari P, Carreras J, Logan BR, van Besien K, Bredeson CN, Freytes CO, Gale 

RP, Gibson J, Giralt SA, Goldstein SC, Gupta V, Marks DI, Maziarz, Vose JM, Lazarus HM, 

Anderlini P. Unrelated donor reduced-intensity and nonmyeloablative stem cell transplantation 

for patients with relapsed and refractory Hodgkin lymphoma. Biol Blood Marrow Transplant 

15:109-117, 2009 

Cooley S, Trachtenberg E, Bergemann TL, Saeteurn K, Klein J, Le C, Marsh SGE, Guethlein 

LA, Parham P, Miller JS, Weisdorf DJ. Donors with group B KIR haplotypes improve relapsefree survival after unrelated hematopoietic cell transplantation for acute myelogenous leukemia. 

Blood 113:726-732, 2009 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

77

Aljurf MD, Zaidi SZ, El Solh H, Hussain F, Ghavamzadeh A, Mahmoud HK, Shamsi T, Ben 

Othman T, Sarhan MM, Dennison D, Ibrahim A, Benchekroun S, Chaudhri N, Labar B, Horowitz 

M, Niederwieser D, Gratwohl A. Special issues related to hematopoietic SCT in the Eastern 

Mediterranean region and the first regional activity report. Bone Marrow Transplant 43:1-12, 

2009

Rizzo JD, Curtis RE, Socié G, Sobocinski KA, Gilbert E, Landgren O, Travis LB, Travis WD, 

Flowers MED, Friedman D, Horowitz MM, Wingard JR, Deeg HJ. Solid cancers after allogeneic 

hematopoietic cell transplantation. Blood 113:1175-1183, 2009 

Tunes da Silva G, Logan BR, Klein JP. Methods for equivalence and noninferiority testing. Biol 

Blood Marrow Transplant 15:120–127, 2009 

Holdsworth R, Hurley C, Marsh SGE, Lau M, Noreen H, Kempenich J, Setterholm M, Maiers M. 

The HLA Dictionary 2008: a summary of HLA-A, -B, -C, -DRB1/3/4/5, -DQB1 alleles and their 

association with serologically defined HLA-A, -B, -C, -DR and -DQ antigens. Tissue Antigens 

73:95-170, 2009 

Qasim W, Cavazzana-Calvo M, Davies EG, Davis J, Duval M, Eames G, Farinha N, Filopovich 

A, Fischer A, Friedrich W, Genery A, Heilmann C, Landais P, Horwitz ME, Porta F, Sedlacek P, 

Seger R, Slatter M, Teague L, Eapen M, Veys P. Allogeneic stem cell transplantation for 

leukocyte adhesion deficiency. Pediatrics 123:836-840, 2009 

Thornley I, Eapen M, Sung L, Lee SJ, Davies SM, Joffe S. Private cord blood banking: 

experiences and views of pediatric hematopoietic cell transplantation physicians. Pediatrics 

123:1011-1017, 2009 

Ringdén O, Pavletic S, Anasetti C, Barrett JA, Wang T, Wang D, Antin JH, Di Bartolomeo P, 

Bolwell BJ, Bredeson C, Cairo MS, Gale RP, Gupta V, Hahn T, Hale GA, Halter J, Jagasia M, 

Litzow MR, Locatelli F, Marks DI, McCarthy PL, Cowan MJ, Petersdorf EW, Russell JA, Schiller 

GJ, Schouten H, Spellman S, Verdonck LF, Wingard JR, Horowitz MM, Arora M. The graftversus-leukemia effect using matched unrelated donors is not superior to HLA-identical siblings 

for hematopoietic stem cell transplantation. Blood 113:3110-3118, 2009

Gale RP, Eapen M, Logan B, Zhang MJ, Lazarus HM. Are there roles for observational 

database studies and structured quantification of expert opinion to answer therapy controversies 

in transplants? Bone Marrow Transplant 43:435-446, 2009 

Davies SM, Wang D, Wang T, Arora M, Ringden O, Anasetti C, Pavletic S, Casper J, MacMillan 

ML, Sanders J, Wall D, Kernan NA. Recent decrease in acute graft-versus-host disease in 

children with leukemia receiving unrelated donor bone marrow transplants Biol Blood Marrow 

Transplant 15:360–366, 2009 

Giralt S, Ballen K, Rizzo D, Bacigalupo A, Horowitz M, Pasquini M, Sandmaier B. Reducedintensity conditioning regimen workshop: defining the dose spectrum. Report of a workshop 

convened by the Center for International Blood and Marrow Transplant Research. Biol Blood 

Marrow Transplant 15:367–369, 2009 

Tunes da Silva G, Klein JP. Regression Analysis of Mean Quality-Adjusted Survival Time Based 

on Pseudo-Observations. Statistics in Medicine 28:1054-1066, 2009 

Lazaro, AM, Xiao Y, Regenscheid A, Ng J, Hurley CK, Posch PE. Characterization of 104 novel 

alleles at the HAL-A, -B, and DRB1 loci from National Marrow Donor Program volunteer donors. 

Tissue Antigens 73:364-372, 2009 

Arora M, Weisdorf DJ, Spellman S, Haagenson M, Klein JP, Hurley CK, Selby GB, Antin JH, 

Kernan NA, Kollman C, Nademanee A, McGlave P, Horowitz MM, Petersdorf E. HLA-identical 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

78

sibling compared with 8/8 matched and mismatched unrelated donor bone marrow transplant for 

chronic phase chronic myeloid leukemia. J Clin Oncol. 27:1637-1643, 2009 

Pulsipher MA, Chitphakdithai P, Miller J, Logan BR, King RJ, Rizzo JD, Leitman SF, Anderlini 

P, Haagenson M, Kurian S, Klein JP, Horowitz MM, Confer DL. Adverse events among 2408 

unrelated donors of peripheral blood stem cells: results of a prospective trial from the National 

Marrow Donor Program. Blood 113:3604-3611, 2009 

Xiao Y, Lazaro AM, Masaberg C, Haagenson M, Vierra-Green C, Spellman S, Dakshanamurthy 

S, Ng J, Hurley CK. Evaluating the potential impact of mismatches outside of the antigen 

recognition site in unrelated hematopoietic stem cell transplantation: HLA-DRB1*1454 and 

DRB1*140101. Tissue Antigens 73:595-598, 2009 

van Besien K, Carreras J, Bierman PJ, Logan BR, Molina A, King R, Nelson G, Fay JW, 

Champlin RE, Lazarus HM, Vose JM, Hari PN. Unrelated donor hematopoietic cell 

transplantation for non-hodgkin lymphoma: long-term outcomes. Biol Blood Marrow Transplant 

15:554-563, 2009 

Lazarus HM, Kan F, Tarima S, Champlin RE, Confer D, Frey N, Gee AP, Wagner JE, Horowitz 

MM, Eapen M. Rapid transport and infusion of hematopoietic cells is associated with improved 

outcome after myeloablative therapy and unrelated donor transplant. Biol Blood Marrow 

Transplant 15:589-596, 2009 

Horan J, Carreras J, Tarima S, Camitta BM, Gale RP, Hale GA, Hinterberger W, Marsh J, 

Passweg JR, Walters MC, Mary Eapen M. Risk factors affecting outcome of second HLAmatched sibling donor transplantation for graft failure in severe acquired Aplastic anemia. Biol 

Blood Marrow Transplant 15:626-631, 2009 

Landgren O, Gilbert ES, Rizzo JD, Socié G, Banks PM, Sobocinski KA, Horowitz MM, Jaffe ES, 

Kingma DW, Travis LB, Flowers ME, Martin PJ, Deeg HJ, Curtis RE. Risk factors for 

lymphoproliferative disorders after allogeneic hematopoietic cell transplantation. Blood 

113:4992-5001, 2009 

Ratanatharathorn V, Logan B, Wang D, Horowitz M, Uberti JP, Ringden O, Gale RP, Khoury H, 

Arora M, Spellman S, Cutler C, Antin J, Bornhaüser M, Hale G, Verdonck L, Cairo M, Gupta V, 

Pavletic S. Prior rituximab correlates with less acute graft-versus-host disease and better 

survival in B-cell lymphoma patients who received allogeneic peripheral blood stem cell 

transplantation. Br J Haematol 145:816-24, 2009 

Spellman SR, Warden MB, Haagenson MD, Pietz BC, Goulmy E, Warren EH, Wang T, Ellis TM. 

Effects of mismatching for minor histocompatibility antigens on clinical outcomes in HLAmatched, unrelated hematopoietic stem cell transplants. Biol Blood Marrow Transplant 15:856-

863, 2009 

Gupta V, Tomblyn M, Pedersen TL, Atkins HL, MD, Battiwalla M, Gress RE, Pollack M, Storek 

J, Thompson JC, Tiberghien P, Young J-A, Ribaud P, Horowitz M, Keating A. Allogeneic 

hematopoietic cell transplantation in HIV-positive patients with hematological disorders: A report 

from the Center for International Blood and Marrow Transplant Research (CIBMTR). Biol Blood 

Marrow Transplant 15:864-871, 2009 

Alousi AM, Weisdorf DJ, Logan BR, Bolanos-Meade J, Carter S, DiFronzo N, Pasquini M, 

Goldstein SC, Ho VT, Hayes-Lattin B, Wingard JR, Horowitz MM, Levine JE Etanercept, 

mycophenolate, denileukin or pentostatin plus corticosteroids for acute graft vs. host disease: a 

randomized phase II trial from the BMT CTN. Blood 114:511-517, 2009 
2010 Biennial Report of the C.W. Bill Young Cell Transplantation Program 

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Shah R, Selby ST, Yokley B, Slack RS, Hurley CK, Posch PE TNF, LTA and TGFB1 genotype 

distributions among acute graft versus host disease (aGVHD) subsets after HLA-matched 

unrelated hematopoietic stem cell transplantation: a pilot study. Tissue Antigens 74:50-56, 2009 

Loberiza FR, Jr., Lee SJ, Freytes CO, Giralt SA, Van Besien K, Kurian S, Del Ciero P, Toro JJ, 

Williams LA, Ketelsen SW, Navarro WH, Rizzo JD. Methodological and logistical considerations 

to study design and data collection in racial/ethnic minority populations evaluating outcome 

disparity in hematopoietic cell transplantation. Biol Blood Marrow Transplant 15:903-909, 2009 

Baxter-Lowe LA, Maiers M, Spellman SR, Haagenson MD, Wang T, Fernandez-Vina M, Marsh 

SG, Horowitz M, Hurley CK HLA-A disparities illustrate challenges for ranking the impact of HLA 

mismatches on bone marrow transplant outcomes in the United States. Biol Blood Marrow 

Transplant 15:971-81, 2009 

Hari P, Zhang M-J, Roy V, Pérez WS, Bashey A, Bik To L, Elfenbein G, Freytes CO, Gale RP, 

Gibson J, Kyle RA, Lazarus HM, McCarthy PL, Milone GA, Pavlovsky S, Reece DE, Schiller G, 

Vela-Ojeda J, Weisdorf D, Vesole D. Is the International staging system superior to the Durie 

Salmon staging system? A comparison in multiple myeloma patients undergoing autologous 

transplant. Leukemia 23:1528-1534, 2009 

Pulsipher MA, Chitphakdithai P, Logan BR, Leitman SF, Anderlini P, Klein JP, Horowitz MM, 

Miller JP, King RJ, Confer DL Donor, recipient, and transplant characteristics as risk factors 

after unrelated donor PBSC transplantation: beneficial effects of higher CD34+cell dose. Blood 

114:2606-2616, 2009 

Marks DI, Ballen K, Logan BR, Wang Z, Sobocinski KA, Bacigalupo A, Burns LJ, Gupta V, Ho 

V, McCarthy PL, Ringden O, Schouten HC, Seftel M, Rizzo JD The effect of smoking on 

allogeneic transplant outcomes. Biol Blood Marrow Transplant 15:1277-1287, 2009 

Majhail NS, Bajorunaite R, Lazarus HM, Wang Z, Klein JP, Zhang M-J, Rizzo JD. Long-term 

survival and late relapse in 2-year survivors of autologous haematopoietic cell transplantation 

for Hodgkin and non-Hodgkin lymphoma. Br J Haematol 147:129–139, 2009 

Pamphilon D, Siddiq S, Brunskill S, Dorée C, Hyde C, Horowitz M, Stanworth S Stem cell 

donation – What advice can be given to the donor? Br J Haematol 147:71-76, 2009 

Confer D, Gress R, Tomblyn M, Ehninger G Hematopoietic cell graft safety Bone Marrow 

Transplant 44:463–465, 2009 

Fenske TS, Hari PN, Carreras J, Zhang M-J, Kamble RT, Bolwell BJ, Cairo MS, Champlin RE, 

Chen Y-B, Freytes CO, Gale RP, Hale GA, Ilhan O, Khoury HJ, Lister J, Maharaj D, Marks DI, 

Munker R, Pecora AL, Rowlings PA, Shea TC, Stiff P, Wiernik PH, Winter JN, Rizzo JD, van 

Besien K, Lazarus HM, Vose JM Impact of pre-transplant Rituximab on survival after autologous 

hematopoietic stem cell transplantation for diffuse large B-cell lymphoma Biol Blood Marrow 

Transplant 15:1455-1464, 2009 

Weisdorf DJ, Nelson G, Lee SJ, Haagenson M, Spellman S, Antin JH, Bolwell B, Cahn J-Y, 

Cervantes F, Copelan E, Gale R, Gratwohl A, Khoury HJ, McCarthy P, Marks DI, Szer J, 

Woolfrey A, Cortes-Franco J, Horowitz MM, Arora M Sibling versus unrelated donor allogeneic 

hematopoietic cell transplantation for chronic myelogenous leukemia: refined HLA matching 

reveals more graft-versus-host disease but not less relapse Biol Blood Marrow Transplant 

15:1475-1478, 2009 

Anderson E, Grzywacz B, Wang H, Wang T, Haagenson M, Spellman S, Blazar BR, Miller JS, 

Verneris MR Limited role of MHC class I chain–related gene A (MICA) typing in assessing graftversus-host disease risk after fully human leukocyte antigen–matched unrelated donor 

transplantation Blood 114:4753-4754, 2009 
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Gajewski JL, LeMaistre CF, Silver SM, Lill MC, Selby GB, Horowitz MM, Rizzo JD, Heslop HE, 

Anasetti C, Maziarz RT. Impending challenges in the hematopoietic stem cell transplant 

physician workforce. Biol Blood Marrow Transplant 15:1493-1501, 2009

Baker KS, Davies SM, Majhail NS, Hassebroek A, Klein JP, Ballen, KK Bigelow CL, Haydar A, 

Frangoul HA, Hard CL, Lee SJ, Rizzo JD. Race and socioeconomic status influence outcomes 

of unrelated donor hematopoietic cell transplantation. Biol Blood Marrow Transplant 15:1543-

1554, 2009 

Bacigalupo A, Ballen K, Rizzo D, Giralt S, Lazarus H, Ho V, Apperley J, Slavin S, Pasquini M, 

Sandmaier BM, Barrett J, Blaise D, Lowski R, Horowitz M. Defining the intensity of conditioning 

regimens: working definitions. Biol Blood Marrow Transplant 15:1628-1633, 2009 

Griffith LM, Cowan MJ, Notarangelo LD, Puck JM, Buckley RH, Candotti F, Conley ME, Fleisher 

TA, Gaspar HB, Kohn DB, Ochs HD, O'Reilly RJ, Rizzo JD, Roifman CM, Small TN, Shearer 

WT. Improving cellular therapy for primary immune deficiency diseases: recognition, diagnosis, 

and management. J Allergy Clin Immunol 124:1152-1160, 2009 

Horowitz MM. High-resolution typing for unrelated donor transplantation: how far do we go? 

Best Pract Res Clin Haematol 22:537-541, 2009 

Fliedner TM, Chao NJ, Bader JL, Boettger A, Case C Jr, Chute J, Confer DL, Ganser A, Gorin 

NC, Gourmelon P, Graessle DH, Krawisz R, Meineke V, Niederwieser D, Port M, Powles R, 

Sirohi B, Weinstock DM, Wiley A, Coleman CN Stem cells, multiorgan failure in radiation 

emergency medical preparedness: a U.S./European Consultation Workshop. Stem Cells 

27:1205–1211, 2009 

Zhang X, Zhang MJ, Fine JP. A Mass Redistribution Algorithm for Right-censored and Lefttruncated Time to Event Data. J of Stat Planning and Inference 9:3329-3339, 2009 

Tomblyn M, Chiller T, Einsele H, Gress R, Sepkowitz K, Storek J, Wingard JR, Young JA, 

Boeckh MJ Guidelines for preventing infectious complications among hematopoietic cell 

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15:1143-1238,2009; Bone Marrow Transplant 44:453-455, 2009, 2009 
81

Appendix G: CIBMTR Summary Slides 

Current Uses and Outcomes of Hematopoietic Stem Cell 

Transplantation 2009: Summary Slides 

INTRODUCTION: The Summary Slides are an annual report on data submitted to the CIBMTR. 

The first half focuses on trends in the use of hematopoietic cell transplantation (HCT) according 

to donor type, graft sources, patient age and transplant regimes. Early outcomes such as 

mortality rates at day 100 post HCT and causes of death are also included in this series. Graphs 

with total transplant numbers (slides 7 & 8) are estimates based on data reported to the 

CIBMTR adjusted according to transplant type. These adjustment factors are derived from 

comparisons with other national and international databases. 

 Acute myeloid leukemia (AML), acute lymphocytic leukemia (ALL), and chronic 

myelogenous leukemia (CML) are classified as early (first complete remission [CR1] or 

first chronic phase [CP1]), intermediate (second or subsequent CR or CP or accelerated 

phase [AP]), and advanced (primary induction failure, active disease, or blastic phase) 

disease. 

 Myelodysplastic syndrome (MDS) is divided into early (refractory anemia [RA] or 

refractory anemia with ringed sideroblasts [RARS]), and advanced (refractory anemia 

with excess of blasts [RAEB] or chronic myelomonocytic leukemia [CMML]) disease. 

 Lymphoma is classified according to sensitivity to prior chemotherapy (chemosensitive 

or chemoresistant). 

The classification of conditioning regimen intensities is based on the agents, doses and 

schedules used. Several classifications are available, and for this report we used a composite 

classification. Cases defined as reduced-intensity by the transplant center were classified as 

such. Cases without such information and with available data on chemotherapy agents, 

radiation and doses were classified according to the CIBMTR operational definition of 

conditioning regimen intensity: 

 Myeloablative conditioning regimen: regimens with total body irradiation doses of ≥500 

cGY, single fractionated doses of ≥800 cGY, busulfan doses of >9mg/kg, or melphalan 

doses of >150 mg/m2 given as single agents or in combination with other drugs. 

 Reduced-intensity conditioning regimen: regimens with lower doses of total body 

irradiation, fractionated radiation therapy, busulfan, and melphalan than those used to 

define a myeloablative conditioning regimen (above). 

The second half of the CIBMTR summary slides describes the probabilities of survival in 

patients with diseases most commonly treated with HCT. The data were derived from patients 

transplanted between 1998 and 2007 and reported to CIBMTR. Survival curves are stratified by 

several factors: recipient age, donor type (i.e. autologous, human leukocyte antigen [HLA]-

identical sibling, or matched-unrelated donor transplant), time from diagnosis to HCT, disease 

status or chemosensitivity at time of transplantation, and conditioning regimen intensity. 

However, all comparisons are univariate and do not adjust for other potentially important factors 

that may impact overall survival. Consequently, differences in outcomes between curves should 

be interpreted cautiously. 

Pasquini MC, Wang Z. Current use and outcomes of hematopoietic stem cell transplantation: 

CIBMTR summary slides, 2009. CIBMTR Newsletter. Available at: 

http://www.cibmtr.org/PUBLICATIONS/Newsletter/index.html. 
82

Slide 1: There are an estimated 50,000-60,000 hematopoietic stem cell transplants (HCTs) done every 

year worldwide. This slide shows several of the notable events in the field over the past decade. They 

include the initial enthusiasm and later disappointment about the use of autologous transplants for breast 

cancer, the availability of targeted non-transplant therapy for chronic myelogenous leukemia (a leading 

use for allogeneic HCT), and the increasing use of autologous and allogeneic HCT in older patients. 

Slide 2: The CIBMTR database includes data reported by more than 500 centers in 54 countries 

worldwide. 
83

Slide 3: Bone marrow is the primary graft source for transplantation in children, though the use of 

peripheral blood and umbilical cord blood grafts is increasing. During the period 2003 to 2007, peripheral 

blood grafts accounted for 28%, and cord blood accounted for 20% of allotransplants in patients younger 

than 20 years of age. Among adults older than 20 years, peripheral blood is the most common source of 

allogeneic grafts. 

Slide 4: Mobilized peripheral blood progenitor cells are currently the main graft source for autologous 

HCT, accounting for greater than 90% of transplants in children. The practice of combining bone marrow 

with peripheral blood stem cells in patients unable to mobilize optimal cell doses has decreased in both 

adults and children (1%). Better mobilization regimens and patient selection may account for this trend. 
84

Slide 5 

Slides 5 & 6: The numbers of autologous and allogeneic HCTs for treatment of the most common 

malignant disease indications in patients older than 60 continue to increase. Thirty-two percent of 

autologous transplant recipients and 10% of allogeneic transplant recipients in 2003-2007 were older than 

60 years of age. The majority of autologous transplant recipients (65%) are older than 50 years in this 

later period. 
85

Slide 7: The most common disease indications for HCT in North America in 2006 were multiple myeloma 

and lymphoma, accounting for 63% of all HCTs. Multiple myeloma was the most common indication for 

autologous transplantation and acute myeloid leukemia was the most common indication for allogeneic 

transplantation. 

Slide 8: Approximately 45% of all allogeneic transplants performed worldwide are from unrelated donors. 

Use of alternative donors depends on the disease indication, recipient’s age, and lack of a related donor. 

Patients with acute leukemias and myelodysplasias most commonly receive unrelated allogeneic 

transplants. The proportion of unrelated transplants performed in acute leukemias and myelodysplasia 

are 47% and 55% respectively.
86

Slide 9 

Slides 9 & 10: The proportion of transplants from unrelated donors is steadily increasing for both children 

and adults. For patients younger than 20, the proportion of unrelated transplants is 53%, with 23% 

utilizing cord blood as the graft source in 2006-2007. The same general trend is observed in patients 

older than 20 as well, with 46% of patients receiving unrelated donor transplants. Studies demonstrating 

similar outcomes between unrelated and related donor transplants, the increased availability of unrelated 

donors, and the increase in use of cord blood for the pediatric population are all responsible for this 

increase. 
87

Slide 11: Graft selection for unrelated donor transplantation has shifted from bone marrow to other 

sources of hematopoietic cells. Among patients younger than 20 years, marrow was used for 40% of 

unrelated donor transplants in 2004-2007, compared to 53% in 2000-2003. Among patients older than 20 

years, marrow accounted for 23% of unrelated donor transplants in 2004-2007, compared to 53% in 

2000-2003. The use of cord blood, however, has increased only modestly in patients older than 20 years, 

reaching just 7%. Limited numbers of cells in single cord blood units is the main barrier for widespread 

use of this graft source in adults. Similar to related donor allogeneic transplantation, peripheral blood 

stem cells are the most common graft source for unrelated HCT in adults 

Slide 12: The past 10 years have seen a steady increase in the number of cord blood banks and 

consequently, in the number of umbilical cord blood transplants. Although cord blood is most frequently 
88

an unrelated donor graft source, there are consistent small numbers of related donor cord blood 

transplants performed every year. 

Slides 13: One-year survival rates after transplant have generally improved in the last two decades. 

Outcomes of unrelated donor transplants are approaching those observed with related donors. 

Improvements in HLA-matching techniques, with consequently better donor selection, better overall 

patient selection for transplantation, and improvements in supportive care are the likely explanation for 

this trend. 

Slide 14: The 100-day mortality rate is often cited to reflect the toxicity of the transplantation process. 

Hundred-day mortality rates are much lower after an autologous than after an allogeneic transplant. The 
89

primary disease and disease status at the time of transplantation also significantly affect early posttransplant mortality. 

Slide 15 

Slide 16 
90

Slides 15 to 17: The effect of disease stage is more apparent for allogeneic transplants. For instance, 

patients receiving HLA-identical sibling transplants for acute myeloid leukemia in remission have a 100-

day mortality rate of 7 to 10% compared to 26% for patients with active leukemia at time of 

transplantation. Early mortality after an unrelated donor transplant is higher than after an HLA-identical 

sibling transplant, but this also depends on the disease and disease stage. The causes of death in the 

first 100 days post-transplant relate mainly to the primary disease, graft-versus-host disease, infection 

and end-organ damage. Early mortality in patients receiving allogeneic transplants after reduced-intensity 

conditioning is generally lower. However, patients with active disease have 100-day mortality rates 

approaching those observed with more intensive conditioning because of high rates of recurrent 

malignancy. 
91 

Slide 18: Relapse is the single most common cause of death after all transplant types, accounting for 

73% of deaths after autologous HCT. Graft-versus-host disease (GVHD), interstitial pneumonitis (IPn) 

and infection are the major causes of death after allogeneic HCT.

Slide 19 

Slide 20 
92

Slide 21 

Slides 19 to 22: The numbers of allogeneic transplants performed with reduced-intensity conditioning 

have steadily increased since 1998, accounting for more than a third of transplants in the later periods. 

Unrelated donor transplants with reduced-intensity conditioning follow the same trends observed with 

transplants with myeloablative conditioning, with a slight majority of unrelated over sibling donor 

transplants. Mobilized peripheral blood is the most common graft source for transplants with reducedintensity conditioning. The age distribution according to conditioning regimen intensity demonstrates the 

preferential use of conditioning regimens with lower intensity in patients older than 50 years. Sixty percent 

of reduced-intensity conditioning recipients are within this age group, compared to fewer than 25% of 

those receiving standard high-intensity regimens. Patients younger than 50 years who are ineligible to 
93

receive myeloablative conditioning because of co-morbidities may undergo an allogeneic transplant with 

reduced-intensity conditioning. 

Slide 23: Acute myeloid leukemia (AML) is the most common indication for reduced-intensity conditioning 

allogeneic transplant, and the proportion of these transplants compared to myeloablative regimens is 

increasing in older patients. Fifty-three percent of patients 50 years and older received an allotransplant 

with reduced-intensity conditioning in 2005-2007. In younger patients, standard myeloablative intensity 

regimens remain the most common.

Slide 24 
94

Slides 24 and 25: The CIBMTR has data for 17,991 patients receiving HLA-matched sibling (n=10,191) 

or unrelated donor (n=7,800) HCT for AML between 1998 and 2007. Disease status at the time of HCT 

and donor type are the major predictors of post-transplant survival. The 3-year probabilities of survival 

after HLA-matched sibling HCT in this cohort are 60% ± 1%, 50% ± 1%, and 25% ± 1% for patients with 

early, intermediate, and advanced disease, respectively. The probabilities of survival after unrelated 

donor HCT are 45% ± 1% for patients with early and intermediate disease and 20% ± 1% for patients with 

advanced disease. 

Slide 26: Among AML patients younger than 20 years, the 3-year probabilities of survival following HCT 

for patients with early, intermediate, and advanced disease are 66% ± 2%, 58% ± 4%, and 37% ± 3%, 

respectively. 
95

Slide 27 

Slides 27 and 28: The 3-year probabilities of survival for the 1,681 patients with AML who received 

transplantation with reduced-intensity conditioning regimen from an HLA-matched sibling donor are 50% 

± 2%, 46% ± 3%, and 19% ± 2% for patients with early, intermediate, and advanced disease, 

respectively. The probabilities of survival for the 1,769 recipients of unrelated donor allogeneic transplants 

are 41% ± 2%, 38% ± 3% and 21% ± 2% for patients with early, intermediate and advanced disease. 
96

Slide 29: Reduced-intensity conditioning regimens are frequently used in patients older than 50 years of 

age or with comorbidities at time of transplant. Among AML patients who received an HLA-matched 

sibling HCT, the 3-year probabilities of survival for patients with early and intermediate disease who 

received a reduced-intensity conditioning regimen were 50% ± 2% and 46% ± 3%, respectively. Among 

patients who received a myeloablative conditioning regimen, the probability of survival was 62% ± 1% in 

patients transplanted in CR1 and 52% ± 2% for those transplanted in subsequent remission. Differences 

in age and other comorbidities were not adjusted in the groups analyzed in this slide. 

Slide 30: The CIBMTR has data for 3,057 autotransplants performed for AML between 1998 and 2007. 

The 3-year probabilities of survival for patients with early, intermediate and advanced AML were 50% ± 

1%, 47% ± 2% and 21% ± 3%, respectively. 
97

Slide 31 

Slides 31 and 32: Allogeneic HCT is a potentially curative treatment for MDS. Outcomes differ according 

to the recipient’s age, donor type, and disease status at transplant. Among 174 recipients of HLAmatched allogeneic HCT younger than 20 years of age, the 3-year probabilities of survival were 62% ± 

6% and 61% ± 5% for patients with early and advanced disease, respectively. The corresponding 

probabilities of survival in the 331 recipients receiving an unrelated donor HCT were 62% ± 4% and 47% 

± 4%. Among the 1,790 patients ≥20 years receiving HLA-matched sibling HCT, the 3-year probabilities of 

survival were 50% ± 2% and 42% ± 2% for early and advanced MDS, respectively. The corresponding 

probabilities in the 1,577 older patients receiving unrelated donor HCT were 46% ± 3% and 32% ± 2%. 
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Slide 33: The median age of patients with MDS at diagnosis is 70 years, limiting the use of myeloablative 

conditioning regimens for most patients with this disease. Reduced-intensity conditioning regimens are 

increasingly used for allogeneic transplantation in MDS. Among 1,097 patients who underwent reducedintensity conditioning allogeneic transplantation for MDS from 2998 to 2007, the 3-year survival 

probabilities for recipients of HLA-matched donor grafts (N=455) were 47% ± 4% and 43% ± 3% HCT for 

early and advanced MDS, respectively. Corresponding probabilities for recipients of unrelated donor 

transplants (N=552) were 48% ± 4% and 26% ± 3%. 

Slide 34 
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Slides 34 and 35: Among young patients with ALL, for whom chemotherapy has a high success rate, 

allogeneic transplantation is generally reserved for patients with high-risk disease (i.e. high leukocyte 

count at diagnosis and presence of poor-risk cytogenetic markers), who fail to achieve remission, or who 

relapse after chemotherapy. Among the 2,237 patients younger than 20 years of age receiving HLAmatched sibling HCT, the 3-year probabilities of survival were 63% ± 2%, 54% ± 2 %, and 27% ± 4% for 

patients with early, intermediate, and advanced disease, respectively. The corresponding probabilities of 

survival among the 2,827 recipients of unrelated donor HCT were 55% ± 2%, 43% ± 1%, and 23% ± 3%. 

Slide 36 
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Slides 36 and 37: Older age at disease onset is a high-risk feature in ALL. Consequently, a larger 

proportion of ALL patients 20 years of age or older undergo allogeneic HCT for early disease. Among 

3,003 patients ≥20 years of age receiving HLA-matched sibling HCT, the 3-year survival probabilities 

were 49% ± 1%, 34% ± 2%, and 20% ± 2% for patients with early, intermediate, and advanced disease, 

respectively. Corresponding probabilities among the 2,624 recipients of unrelated donor HCT were 44% ± 

2%, 32% ± 2%, and 14% ± 2%. 

Slide 38: Annual numbers of patients undergoing allogeneic transplantation for the most common 

disease indications have changed over the past decade. While allogeneic transplantation for AML and 

ALL have steadily increased, allogeneic transplantation for CML has decreased. Tyrosine kinase 

inhibitors are currently the first treatment option for patients with newly-diagnosed CML and allogeneic 
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transplantation is reserved for patients who fail such therapy. The CIBMTR has data for 5,171 HLAmatched sibling donor allogeneic transplants for CML patients in CP (n=2,440) and in AP (n=2,731) 

between 1998 and 2007. Among patients in CP, the 3-year probability of survival were 69% ± 1% and 

72% ± 1% for transplants in performed in the periods 1998 to 2000 and 2001 to 2007, respectively. 

Corresponding 3-year survival probabilities for patients in AP were 45% ± 3% and 57% ± 3%. 

Slide 39: Both autologous and allogeneic HCT are treatment options for CLL patients who fail standard 

chemotherapy or have high-risk features (e.g. cytogenetic abnormalities). The use of reduced-intensity 

conditioning regimens for allogeneic HCT continues to increase in this population. Among the 1,415 

patients who underwent HCT for CLL, the 3-year probabilities of survival were 78% ± 2% after autologous 

transplants, 53% ± 3% after HLA-matched sibling HCT with a myeloablative conditioning regimen, and 

58% ± 3% after HLA-matched sibling HCT with a reduced-intensity conditioning regimen. 
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Slide 40: Allogeneic HCT is the treatment of choice for young patients with severe aplastic anemia and 

an HLA-matched sibling donor available. Among the 2,565 patients receiving HLA-matched HCT for 

severe aplastic anemia between 1998 and 2007, the 3-year probabilities of survival were 86% ±1% for 

those younger than 20 years and 73% ± 1% for those 20 years of age or older. Among the 905 recipients 

of unrelated donor HCT, the corresponding probabilities of survival were 65% ± 2% and 58% ± 3%. 

Slide 41: Survival probabilities for recipients of allogeneic HCT for SAA improved between 1992 and 

2003. Among recipients of HLA-matched sibling donor grafts, the 3-year survival probabilities were 71% ± 

1%, 76% ± 1%, and 79% ± 1% in transplants performed in the periods from 1992 to 1995, 1996 to 1999, 

and 2000 to 2003, respectively. Corresponding probabilities for recipients of unrelated donor transplants 
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were 41% ± 3%, 45% ± 3%, and 60% ± 3%. Better patient and donor selections, and improvements in 

supportive care contributed to improvements in survival outcomes in this population. 

Slide 42: Transplantation for Hodgkin Disease (HD) is indicated in patients who have failed initial 

chemotherapy or radiation therapy. Survival after HCT for HD depends on disease response to previous 

salvage therapy. Among the 5,736 patients receiving autologous transplants for HD between 1998 and 

2007, the 3-year probabilities of survival were 81% ± 1%, 69% ± 1%, and 51% ± 2% for patients in 

complete remission, in partial remission, and with chemoresistant disease, respectively. 

Slide 43: Allogeneic HCT for HD is generally performed in patients who experience disease relapse after 

receiving multiple lines of therapy or who have refractory disease and an available HLA-matched donor. 
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The use of reduced-intensity conditioning regimens in these heavily pretreated patients allows for a graftversus-lymphoma effect with less regimen-related toxicity. Among 297 patients receiving HLA-matched 

HCT for HD between 1998 and 2006, the 3-year probabilities of survival were 39% ± 5% with 

myeloablative conditioning regimens and 38% ± 5% with reduced-intensity conditioning regimens. The 

corresponding probabilities of survival in the 138 recipients of unrelated donor HCT were 35% ± 7% and 

46% ± 8%. 

Slide 44 

Slides 44 and 45: Transplantation for follicular lymphoma is generally reserved for patients with recurrent 

or aggressive disease. Autologous transplantation is the most common transplant approach in this 
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disease. Among the 1,932 patients receiving an autologous transplant for follicular lymphoma between 

2000 and 2007, most had chemosensitive disease. The 3-year probabilities of survival were 75% ± 1% 

and 53% ± 5% for patients with chemosensitive and chemoresistant disease, respectively. Similar to CLL 

and HD, the use of reduced-intensity conditioning regimens is increasing for patients with follicular 

lymphoma. Among 813 patients with follicular lymphoma undergoing HLA-matched sibling donor 

allogeneic HCT between 1998 and 2007, the 3-year probabilities of survival for patients with 

chemosensitive disease (N=685) were 68% ± 3% and 71% ± 3% for those receiving myeloablative and 

reduced intensive conditioning regimens, respectively. Corresponding probabilities in the 128 patients 

with chemoresistant follicular lymphoma were 69% ± 6% and 57% ± 8%. 

Slide 46 
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Slides 46 and 47: Autologous transplants are an accepted treatment indication for diffuse large B-cell 

lymphoma and, similar to follicular lymphoma, most autologous transplants are performed in patients with 

chemosensitive disease. Among the 5,973 patients who received an autologous transplant for diffuse 

large B-cell lymphoma between 2000 and 2007, the 3-year probabilities of survival were 62% ± 1% and 

35% ± 3% for patients with chemosensitive and chemoresistant disease, respectively. Allogeneic HCT for 

treatment of diffuse large B-cell lymphoma is performed less frequently than for follicular lymphoma and is 

generally used only in patients with aggressive disease that has been resistant to previous therapies, 

including autologous transplants. Among the 539 patients who underwent an HLA-matched sibling HCT 

for diffuse large B cell lymphoma from 1998 to 2007, the 3-year probabilities of survival for patients with 

chemosensitive disease (N=406) were 39% ± 3% and 48% ± 5% for patients receiving myeloablative and 

reduced-intensity conditioning regimens, respectively. The corresponding probabilities in the 133 patients 

with chemoresistant diffuse large B-cell lymphoma were 21% ± 5% and 17% ± 8%. 

Slide 48: The optimal timing of HCT for mantle cell lymphoma is not yet well defined. As with other 

mature B cell lymphoproliferative disorders, autologous transplantation is the most common transplant 

approach. Among the 2,038 patients who received an autotransplant for mantle cell lymphoma between 

1998 and 2007, the 3-year probability of survival was 68% ± 1%. Among 688 patients who underwent an 

allogeneic transplantation for mantle cell lymphoma during the same period, the 3-year probabilities of 

survival for HLA-matched sibling donor transplants (N=471) were 52% ± 4% and 55% ± 4% for patients 

receiving myeloablative and reduced-intensity conditioning regimens, respectively. Corresponding 

probabilities for unrelated donor transplantation (N=217) were 40% ± 6% and 41% ± 5%. 
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Slide 49: Multiple myeloma is the most common indication for autologous HCT. Among 18,161 patients 

who received a single autotransplant for multiple myeloma between 1998 and 2007, the 3-year probability 

of survival was 68% ± 1%. Allogeneic transplantation for multiple myeloma is reserved for patients with 

high risk disease, and the majority of them are performed after an autologous HCT with reduced-intensity 

or nonmyeloablative conditioning regimens. Among the 979 patients who received an allogeneic HCT 

from 1998 to 2007, the 3-year probabilities of survival was 47% ± 2% for the 851 recipients of HLAmatched sibling donor grafts and 28% ± 5% for the 120 recipients of unrelated donor grafts.