Report to Congressional Committees 

United States General Accounting Office

GAO 

October 2002 BONE MARROW 

TRANSPLANTS 

Despite Recruitment 

Successes, National 

Program May Be 

Underutilized 

GAO-03-182 
Page i GAO-03-182 Bone Marrow Transplants 

Letter 1

Results in Brief 3

Background 5

NMDP Has Succeeded in Increasing Recruitment of Donors, 

Including Minorities, but May Not Be Able to Equalize Access to 

Matches 11

National Registry May Be Underutilized 16

Organizations in the NMDP Network Generally Comply with Its 

Standards and Procedures 21

Concluding Observations 25

Agency Comments 25

Appendix I Methods of Assessing Registry Utilization 28

Method Based on Number of HLA-Identical Sibling Transplants 28

Method Based on Number of Preliminary Searches 31

Method Based on Incidence of Disease 32

Appendix II How NMDP Achieves Network Compliance 

with Selected Standards and Procedures 34

Informed Consent of Donors and Patients 34

Criteria for Donor Selection 35

Methods to Protect Confidentiality 35

Marrow Collection and Transport 36

Laboratory Standards 36

Donor File Maintenance and Updates 37

Appendix III Comments from the Health Resources and 

Services Administration 38

Appendix IV GAO Contact and Staff Acknowledgments 42

Tables 

Table 1: Percentage Increase in Registry Donors, by Racial and 

Ethnic Group, 1998 to 2000, and Current Proportion of 

Groups on the Registry and in the Population 12

Contents 
Page ii GAO-03-182 Bone Marrow Transplants 

Table 2: U.S. Patients’ Utilization of the Registry, by Race and 

Ethnicity, 1997 to 2000 18

Table 3: Reasons for Preliminary Search Cancellation, January 2000 

through September 2001 19

Table 4: Reasons for Formal Search Cancellation, 1997 to 2000 20

Table 5: Alternate Approach to the Analysis of U.S. Patients’ 

Utilization of the Registry, by Race and Ethnicity, 1997 to 

2000 31

Table 6: Average Annual Unrelated Donor NMDP-Facilitated 

Transplants and Estimated Number of Potential Recipients 

for U.S. Patients with Selected Diseases Who Might Benefit 

from Unrelated Stem Cell Transplants, by Race/Ethnicity, 

1997 through 2000 33

Figure 

Figure 1: Theoretical Probability of Patient’s Finding at Least One 

Matched Donor, by Racial and Ethnic Group, 1988 to 2001 14

Abbreviations 

ABMTR Autologous Blood and Marrow Transplant Registry 

CPI Continuous Process Improvement 

HHS Department of Health and Human Services 

HLA human leukocyte antigens 

HRSA Health Resources and Services Administration 

IBMTR International Bone Marrow Transplant Registry 

NMDP National Marrow Donor Program 

OIG Office of Inspector General 

OPA Office of Patient Advocacy 

PBSC peripheral blood stem cells 
Page 1 GAO-03-182 Bone Marrow Transplants 

October 18, 2002 

Congressional Committees 

More than 30,000 people are diagnosed annually with leukemia or other 

blood, metabolic, or immune system disorders, many of whom may die 

without stem cell transplants, using stem cells from bone marrow or 

another source.1

 When a patient needs a transplant of donated stem cells 

and no genetically compatible related (family) donor is available, the 

National Bone Marrow Donor Registry (Registry) may help the patient 

search for compatible stem cells from unrelated donors. Founded in 1986, 

the Registry is the largest and most diverse list of potential donors in the 

world. This list currently includes more than 4 million donors.2

 The 

Registry is operated by the nonprofit National Marrow Donor Program 

(NMDP) under contract to the Department of Health and Human Services’ 

(HHS) Health Resources and Services Administration (HRSA), with 

additional support from the U.S. Navy.3

 NMDP coordinates stem cell 

transplants through its network of more than 400 participating 

organizations, domestic and foreign, involved in transplantation, including 

donor centers, which recruit and manage donors; laboratories; blood 

sample repositories; bone marrow collection centers; and transplant 

centers. NMDP has facilitated more than 14,000 transplants since 1987. 

Concerns about the Registry have been raised by the HHS Office of the 

Inspector General (OIG) and in our own work. These include the extent to 

which the Registry provides equality of opportunity for patients of all 

racial and ethnic groups to find compatible (matched) unrelated donors, 

the extent to which it is utilized by those in need of stem cell 

transplantation, and the effectiveness of the management of the donor 

 1

The first source of stem cells for transplant was bone marrow, but now stem cells from the 

bloodstream or from umbilical cord blood can also be used. We use the term stem cell 

transplant to include both bone marrow transplants and transplants involving one of these 

newer sources of stem cells. 

2

We use the term donors throughout this report to refer to potential donors on the Registry, 

most of whom have not donated stem cells, only expressed their willingness to do so. 

3

The Navy was instrumental in the founding of the Registry and has maintained its interest 

in stem cell donation over the years. HRSA and the Navy each contributed a little less than 

20 percent of the Registry’s fiscal year 2002 funding (about $21 million and $20.5 million, 

respectively), with program revenue and private sources providing the rest of the total of 

about $108 million. 

United States General Accounting Office

Washington, DC 20548 
Page 2 GAO-03-182 Bone Marrow Transplants 

centers. We reported in 1992 that the proportions of African American and 

Hispanic donors on the Registry were less than their proportions in the 

U.S. population.4

 This imbalance results in a decreased likelihood of an 

individual from a minority group finding a match and eventually receiving 

a transplant because matches are more likely to be found from among 

donors of one’s own group. In an effort to address these concerns, a 1996 

OIG report recommended that HRSA and NMDP reexamine the method 

used to finance the donor centers that recruit volunteers to join the 

Registry.5

 It recommended a performance-based method to pay donor 

centers for specific activities including monetary incentives tied to 

performance indicators and emphasizing recruitment and retention of 

donors, especially those from racial and ethnic minority groups. 

The National Bone Marrow Registry Reauthorization Act of 19986

 required, 

among other things, that the Registry carry out a donor recruitment 

program giving priority to minority and underrepresented donor 

populations, ensure efficiency of operations, and verify compliance with 

standards by organizations that participate in the Registry. In addition, the 

act required that we conduct a study of the Registry, including an 

examination of the extent to which it has increased representation of 

racial and ethnic minority groups so that a member of such a group has a 

probability of finding a match comparable to that of a person who is not a 

member of such a group. In conducting this study, we addressed the 

following questions: (1) To what extent have the program’s recruitment 

efforts increased the enrollment of donors, including those from racial and 

ethnic minority groups, since the 1998 act took effect, and has the chance 

of finding a suitable match increased? (2) To what extent is the Registry 

utilized to search for and obtain transplants? (3) Are the donor centers and 

other organizations in the NMDP network complying with its standards 

and procedures? 

To answer these questions, we analyzed NMDP data on racial and ethnic 

representation on the Registry from 1998 through 2001 and, to provide a 

broader context for examining these changes, also analyzed data on racial 

 4

U.S. General Accounting Office, Bone Marrow Transplants: National Program Has 

Greatly Increased Pool of Potential Donors, GAO/HRD-93-11 (Washington, D.C.: Nov. 4, 

1992). 

5

HHS OIG, National Marrow Donor Program: Financing Donor Centers, OEI-01-95-00123 

(Washington, D.C.: December 1996). 

6

Pub. L. No. 105-196, 112 Stat. 631 (1998). 
Page 3 GAO-03-182 Bone Marrow Transplants 

and ethnic representation in relation to the patients who searched the 

Registry from 1988 through 2001. In addition, we analyzed data provided 

by the International Bone Marrow Transplant Registry (IBMTR)7

 on 

transplants from related donors from 1997 through 2000, which enabled us 

to estimate the demand for unrelated donor transplants in the United 

States and relate this estimate to Registry utilization by patients searching 

for donors during this period; analyzed NMDP data on matches, canceled 

searches, and transplants obtained for patients needing donors during this 

period; reviewed NMDP’s standards for participating in the Registry; and 

reviewed evidence of compliance with the standards and procedures by 

the organizations that participate. We also interviewed officials of NMDP; 

HRSA; the Department of the Navy; the American Red Cross; and selected 

donor, stem cell collection, and transplant centers. We did not 

independently verify the accuracy of the data provided by NMDP. We 

conducted our work from June 2001 through June 2002 in accordance with 

generally accepted government auditing standards. 

From 1998, when the National Bone Marrow Registry Reauthorization Act 

was enacted, through 2001, the number of stem cell donors on the Registry 

increased for all racial and ethnic groups. NMDP recruitment efforts 

focused on minority groups appear to have been effective in increasing the 

number of donors from these populations. Since 1998 the number of 

donors on the Registry has increased by 36 percent, and increases for 

minority groups ranged from 30 percent to 53 percent. The total of more 

than 1 million minority donors listed in 2001 contrasts with the 

approximately 80,000 we reported in 1992. The proportional distribution of 

racial and ethnic groups on the Registry was much closer to their 

proportional distribution in the U.S. population at the end of 2001 than it 

was in our 1992 review. However, when viewed as a percentage of each 

group’s proportion of the U.S. population, African Americans and 

Hispanics are underrepresented by 17 and 15 percent, respectively. The 

underrepresentation of minorities is somewhat mitigated by the Registry’s 

efforts to have complete genetic information needed for typing on a higher 

proportion of minority donors, which facilitates more rapid matching. For 

all racial and ethnic groups, the theoretical probability of finding a match 

has grown as the Registry size has increased, but equal access to a match 

may not be attainable. Differences among racial and ethnic groups in the 

rarity and variability of the genes responsible for compatibility in 

 7

IBMTR is not a donor registry; it records data about transplants performed. 

Results in Brief 
Page 4 GAO-03-182 Bone Marrow Transplants 

transplants may mean that the Registry cannot achieve equal probability 

for all groups. Further, devoting many resources in pursuit of a small 

number of rare genetic types may divert resources from other efforts, such 

as recruiting Caucasians and other groups with more common genetic 

types, which might more readily increase the number of matches. 

Although the exact number of patients in need of transplants is not known, 

estimates suggest that about one-third of them utilize the Registry to 

search for donors. The number of transplants facilitated by NMDP 

represents about one-tenth of those we estimate to be in need of unrelated 

donor transplants. These figures suggest that the Registry may be 

underutilized for both searching and facilitating transplants. From 1997 

through 2000, an estimated 44,740 U.S. patients were in need of unrelated 

donor transplants. During this period, physicians for approximately 15,000 

U.S. patients conducted preliminary searches for donors on the Registry, 

and about 4,000 of these patients obtained unrelated donor transplants 

facilitated by NMDP. About 25 percent of formal searches were not 

completed because stem cells were obtained from donors or organizations 

without the involvement of NMDP. 

The organizations that are involved in transplantation and participate in 

the NMDP network generally adhere to NMDP’s standards and procedures. 

NMDP monitors the compliance and performance of these organizations 

with its standards by using several systems of feedback and incentives, 

including site visits. Centers that deviate from NMDP’s standards may be 

placed on probation or suspended or their participation in the network 

may be terminated. In 2001, NMDP required 24 centers to take corrective 

actions because they did not meet its standards. Further, NMDP 

reimburses donor centers for services based on their performance by 

offering financial incentives to centers that consistently meet donor 

recruitment goals and financially penalizing centers that do not. 

In its written comments on a draft of this report, HRSA stated that the 

report provides an accurate and helpful overview of the status of the 

National Bone Marrow Donor Registry. HRSA agreed that other efforts are 

needed in addition to minority recruitment efforts in order to improve 

minority access to unrelated donor transplants, but pointed out that the 

Registry has complete genetic information needed for matching on higher 

proportions of minority donors than it has for Caucasian donors. We have 

clarified this information in the report. HRSA agreed that many patients 

who could benefit from transplants do not utilize the Registry but 

suggested a slightly modified method of determining the number of 

patients in need of transplants. We accepted this suggestion, but note that 
Page 5 GAO-03-182 Bone Marrow Transplants 

both approaches produce virtually identical estimates of overall 

underutilization. (See app. I.) HRSA also noted that many factors affect the 

time required to complete a search of the Registry and that NMDP has 

completed medically urgent searches in less than a month. We have 

included this clarification in the report. In addition, HRSA provided 

technical comments, which we have incorporated as appropriate. 

Most of the diseases treated by stem cell transplantation involve 

abnormalities of the blood, metabolic, or immune systems. These diseases 

include several forms of cancer as well as certain nonmalignant diseases.8

They strike all races, although one racial group or another may have a 

higher incidence rate for a particular disease.9

 Not all patients with 

diseases that may be cured by stem cell transplants necessarily pursue 

them. Depending on a number of donor and patient characteristics, from 

about 10 to 50 percent of patients are alive 5 years after transplants. The 

patients who do not survive may succumb either to their diseases or to the 

consequences of transplantation. Because of these low survival rates, 

some patients and physicians may be reluctant to select this stressful 

treatment under most or all circumstances. For most of the diseases 

involved, other therapies are available that may be less invasive, carry 

lower risk, or be the medically preferred initial treatment. Nevertheless, 

some of these diseases are best treated by stem cell transplantation, either 

initially or after other treatments have failed. 

Prior to stem cell transplantation, the patient’s bone marrow and, 

consequently, immune system are destroyed with radiation or 

chemotherapy. The patient’s bloodstream is then infused with healthy 

stem cells from a donor. Healthy stem cells can be therapeutic because 

they can develop into all the components of blood, including those needed 

to replace the patient’s immune system. In an “autologous” transplant, 

 8

Almost 90 percent of the transplants coordinated by NMDP are for types of cancer, 

including, in descending order of frequency, chronic myelogenous leukemia, acute 

myelogenous leukemia, acute lymphocytic leukemia, myelodysplastic disorders, and nonHodgkin’s lymphoma. The nonmalignant diseases most commonly treated by stem cells 

obtained through NMDP are aplastic anemia and several varieties of inherited disorders of 

the metabolic, immune, and blood systems. 

9

For example, the age-adjusted incidence rate per 100,000 patients with acute 

myelogeneous leukemia over the period from 1995 through 1999 is higher for Caucasians 

(3.7) than for African Americans (2.9). In contrast, for patients with myeloma, the rate is 

higher for African Americans (11.5) than for Caucasians (5.2). 

Background 
Page 6 GAO-03-182 Bone Marrow Transplants 

these cells come from the patient’s own marrow. In a “syngeneic” 

transplant, the cells come from an identical twin. For many diseases, the 

most common type of transplant is an “allogeneic” transplant, which 

consists of stem cells from a genetically compatible donor. 

Although bone marrow was initially the only source of stem cells for 

transplantation, in recent years two other sources of stem cells, umbilical 

cord blood and peripheral blood stem cells (PBSC), have also been used. 

In 2001, 1,215 of the transplants facilitated by NMDP (70 percent) involved 

marrow, 42 (2 percent) involved cord blood, and 491 (28 percent) involved 

PBSC. Umbilical cord blood is collected from the placenta and umbilical 

cord of a newborn and then preserved in a cord blood bank until needed 

by a matched patient. The number of stem cells typically obtained from 

cord blood is relatively small but is often adequate for pediatric patients. 

For transplantation from cord blood, the blood is volunteered when the 

blood is banked, not when it is used. The Registry began an umbilical cord 

blood stem cell program in 1998. Stem cells from peripheral blood may be 

obtained in numbers sufficient for transplantation when the donor is 

treated with a drug that causes the cells to leave the marrow and enter the 

bloodstream where they can be extracted using a process where the stems 

cells are removed and the remaining components of the blood are returned 

to the donor. A donor, matched to a patient, may be asked to donate either 

bone marrow or PBSC, depending on the preference of the patient’s 

physician. The Registry has offered PBSC to patients since 1999. 

In addition to its dependence on such common determinants of treatment 

success as patient age and disease severity, the outcome of a transplant 

depends on the degree of match between donor and patient with respect 

to particular blood cell proteins—the human leukocyte antigens (HLA)—

that are part of a person’s genetic makeup.10 Each person has three 

primary pairs (one set of three from each parent) of these antigens that 

play a major role in the compatibility of a transplant. A matched donor is 

defined as one for whom each of these six antigens has the same kind of 

HLA. If a matched donor cannot be found, then a donor with certain types 

of mismatch may be used, depending on the transplant center’s 

 10An antigen is a protein found on the outside of most cells in the body that induces the 

formation of antibodies. There are a number of antigens in the human body, and HLA are a 

set of these. 

Bone Marrow and Other 

Sources of Stem Cells for 

Transplantation 

Matching Donor and 

Patient 
Page 7 GAO-03-182 Bone Marrow Transplants 

preferences, although usually with poorer results. In general, the more 

closely related two people are, the more likely it is that their HLA will 

match. At one extreme, identical twins always match, and, in fact, match 

on all antigens, not just the six ordinarily focused upon. At the other 

extreme, members of separate racial groups are relatively unlikely to 

match one another. Full siblings can provide a six out of six match, 

resulting in what is called an “HLA-identical sibling transplant,” but only 

about 30 to 40 percent of patients can be expected to have a matched 

sibling donor. As a result, unrelated donors with matched HLA are sought 

from the registries in which their HLA type has been recorded. 

The definition of a match has been refined over time as scientific 

understanding of HLA increases. HLA are being typed more precisely, so 

more types of HLA can now be distinguished. Thus, some of today’s 

matches may be judged as mismatches in the future because better 

matches are possible. This increasing refinement does not mean, however, 

that finding a suitable match for transplantation is inevitably becoming 

more difficult. Some kinds of mismatch may be less dangerous than 

others. As a result, as research continues, there may be fewer matches by 

today’s standards, but relatively harmless mismatches will be recognized 

as such and used. Further, there is evidence that cord blood may not 

require as exact an HLA match as is usually sought. 

In support of the Registry, NMDP manages a worldwide network 

consisting of more than 400 donor centers, recruitment groups,11 contract 

laboratories where tissue is typed, apheresis centers,12 cord blood banks, 

collection centers where marrow is harvested, blood sample repositories, 

and transplant centers. More than half of these organizations are donor 

(91) or transplant centers (149). The relationship of these network 

components to NMDP varies. Some, such as the recruitment groups, were 

designed to be parts of the network and work with NMDP, whereas others, 

such as the transplant centers, exist separately from the network and 

function independently of NMDP except where specified by contract. 

 11Recruitment groups actively seek donors, sometimes ones of a particular ethnic or racial 

heritage. 

12Apheresis is a technique for separating blood into its components, using a machine that 

draws blood from a vein in a donor’s arm; filters out the desired product, such as PBSC; 

and returns the remaining blood to the donor. 

The NMDP Network 
Page 8 GAO-03-182 Bone Marrow Transplants 

The NMDP network includes donor centers and other organizations in 

foreign countries.13 The foreign donor centers merge their files with the 

Registry, contributing more than one million donors. These centers are 

required to comply with NMDP policies, program standards, and other 

criteria, although fees for recruiting donors and other financial incentives 

and payments that go to U.S. centers are not paid to foreign centers.14

NMDP has also signed cooperative agreements with national registries in 

13 foreign countries.15 Although certain data on donors recruited into these 

registries are not entered into the Registry’s computer system, these 

foreign registries will search their donor files on behalf of a U.S. patient 

searching the Registry. In addition, 6 foreign apheresis centers, 18 foreign 

bone marrow collection centers, and 36 foreign transplant centers are 

affiliated with the Registry. NMDP’s affiliations with foreign donor and 

transplant centers result in its facilitation of both foreign-to-U.S. and U.S.-

to-foreign donations. 

The existence of these international affiliations with the Registry does not 

prevent U.S. transplant centers from obtaining stem cells through foreign 

registries directly, that is, without going through Registry channels. Even 

domestically, the Registry is not a monopoly; other U.S. registries also 

maintain lists of donors, conduct searches for stem cells, or perform both 

of these functions.16 These other registries, however, are relatively small; 

often specialize in donors from particular racial or ethnic groups; and are 

private, with no national requirements. 

 13There are seven such donor centers. Three of these are in Germany, and the others are 

located in the Netherlands, Israel, Sweden, and Norway. 

14HRSA consults with the Department of State on proposed membership of foreign 

organizations. 

15These countries are Australia, Austria, Canada, the Czech Republic, England, France, 

Ireland, Italy, Japan, Singapore, Spain, Switzerland, and Taiwan. 

16For example, the American Bone Marrow Donor Registry of Mandeville, Louisiana, is 

composed of a Patient Advocacy Office that coordinates and processes search requests and 

a Donor Services Division that educates, recruits, and maintains the records of donors. 

Moreover, it has regional components, also called registries. Other U.S. registries include 

the Caitlin Raymond International Registry of Worcester, Massachusetts, and the Gift of 

Life Foundation of Boynton Beach, Florida. In addition, there are a number of U.S. cord 

blood banks including ones in New York, New Jersey, Missouri, and Massachusetts (part of 

the Caitlin Raymond International Registry). 
Page 9 GAO-03-182 Bone Marrow Transplants 

The Registry serves two groups of people, donors and patients. The 

Registry’s donor centers and recruitment groups recruit donors, who are 

then managed by the donor centers. The Registry pays these centers and 

groups for signing up donors. In view of the past underrepresentation of 

minorities in the Registry, NMDP has initiated several recruitment efforts 

to increase its racial and ethnic diversity. For example, it provides free or 

low-cost minority-specific educational materials to donor centers and 

recruitment groups. Probably the most important aspects of managing 

donors are to maintain their commitment to donation so that they are 

locatable and willing to donate when their stem cells are requested, to 

keep records of how to contact them, and to drop from the list any 

individuals who are too old17 or no longer able or willing to donate. 

A patient’s first contact with the Registry occurs when his or her physician 

or a transplant center conducts a free, preliminary search of the Registry 

for stem cell donors and cord blood units. The preliminary search, which 

takes about 24 hours, produces a list of donors and cord blood units that 

are potentially suitable for that patient. However, many patients for whom 

such searches are conducted are not necessarily good candidates for stem 

cell transplants. For example, some searches may be conducted for 

patients who are too sick for transplantation or who are good candidates 

for less invasive therapies. 

If the physician and patient decide to continue a search for an unrelated 

donor (or unrelated cord blood) on the Registry, then more information 

about the matching stem cells is required and a formal search is begun. 

Only a physician affiliated with a transplant center in the NMDP network 

may conduct a formal search of the Registry. The Registry bills the 

transplant center a one-time activation fee of $600. It also bills the center 

for the cost of the four or five testing components of the search process, 

each of which costs more than $100. Since several donors may have to be 

tested before one is selected for the patient, these component charges may 

be made repeatedly, resulting in a search costing thousands of dollars to 

the transplant center, and more to the patient when the center adds its 

markups. Relatively few insurance plans pay for searches; however, plans 

often pay for the actual transplantation including the procurement of stem 

cells. The details of the formal search and the subsequent steps in the 

process possibly leading to transplantation depend on the additional 

information needed; the results of laboratory tests; and the kind of stem 

 17Donors are considered too old to donate at age 61. 

Operation of the NMDP 

Registry 
Page 10 GAO-03-182 Bone Marrow Transplants 

cells sought, whether stored blood from an umbilical cord or blood or 

marrow from a living donor. 

If a suitable donor or suitable cord blood unit is found, and if other 

requirements in the process toward transplantation are fulfilled,18 then 

either (1) the marrow is harvested from the donor at a collection center, 

(2) PBSC are collected from the donor at an apheresis center, or (3) the 

cord blood is shipped from a cord blood bank. The stem cells are 

transported to the transplant center, often by courier. The final step is the 

infusing of the patient’s bloodstream with the selected marrow, PBSC, or 

cord blood. The entire process—from the initiation of the formal search to 

the transplant (infusion)—typically requires many months and sometimes 

more than 1 year. However, some patients cannot wait this long for 

transplants because their medical conditions are deteriorating. 

During the search process, NMDP offers patient advocacy services 

through two channels. Its Office of Patient Advocacy (OPA) provides 

several services, including education, support, case management 

intervention, financial assistance, and special advocacy projects. For 

example, OPA publishes the Transplant Center Access Directory, a 

patient guide listing all transplant centers in the NMDP network. The 

directory describes each center’s HLA matching criteria and lists the 

diseases each typically treats with unrelated donor marrow transplants. 

The directory also provides information on comparable search charges 

and risk-adjusted patient survival data. In addition to the services provided 

through OPA, NMDP requires that each transplant center have a patient 

advocate on staff. The patient advocate must be familiar with the center’s 

transplant program and with issues of unrelated donor stem cell 

transplantation and must not be a member of the transplant team. 

A 1996 OIG review raised concerns about donor center costs and 

performance. Before the review, NMDP used two methods to finance 

donor centers. NMDP paid for services at some donor centers through 

cost-based contracts for direct expenses, such as labor and fringe benefits 

and donor expenses. Other donor centers received payments from NMDP 

for specified activities, such as donor recruitment and donor search 

activities. The OIG recommended that HRSA and NMDP develop a 

 18These include confirmation of donor availability and willingness, satisfactory results of 

laboratory tests done on the donor, and the patient’s desire to continue the search. 

OIG Review 
Page 11 GAO-03-182 Bone Marrow Transplants 

payment approach for all donor centers that more directly linked funding 

to performance and emphasize recruitment and retention of donors, 

particularly donors from racial and ethnic minority groups. Further, the 

OIG recommended that HRSA and NMDP develop procedures to monitor 

the performance of donor centers and other organizations in the NMDP 

network. 

The program’s recruitment efforts have apparently increased the number 

of donors on the Registry since 1998 for all racial and ethnic groups, and 

the theoretical probability of finding a match has increased steadily over 

the life of the Registry. By 2001, the number of donors from each minority 

group on the Registry had grown by at least 30 percent and was either 

greater than or no more than 2 percentage points below its representation 

in the general population. However, when viewed as a percentage of each 

group’s population, African Americans and Hispanics are still substantially 

underrepresented. For all racial and ethnic groups, the theoretical 

probability of finding a match has grown as the Registry size has 

increased, but equal access to a match may not be attainable. Differences 

among racial and ethnic groups in the rarity and variability of the genes 

responsible for compatibility in transplants may mean that the Registry 

cannot achieve equal probability for all groups. Further, the goal of equal 

access to a match conflicts to some extent with attempts to maximize the 

overall numbers of matches and transplants for the Registry. 

The size of the Registry has increased since 1998 by 36 percent, and no 

minority group increased by less than 30 percent. NMDP’s efforts to 

recruit minorities may have substantially increased the number of donors 

from these populations. Percentage increases for minorities ranged from 

30 percent for Native Americans to 53 percent for Hispanics. Caucasian 

donors increased 28 percent. (See table 1.) The multiple race category had 

the largest increase, 123 percent, but this may result in part from an 

increase in the use of that category by those to whom it applies, rather 

than solely from an increase in the availability of donors of that group. 

NMDP Has Succeeded 

in Increasing 

Recruitment of 

Donors, Including 

Minorities, but May 

Not Be Able to 

Equalize Access to 

Matches 

Number of Donors on 

Registry Has Increased for 

All Groups 
Page 12 GAO-03-182 Bone Marrow Transplants 

Table 1: Percentage Increase in Registry Donors, by Racial and Ethnic Group, 1998 to 2000, and Current Proportion of Groups 

on the Registry and in the Population 

Race/ethnicity 

Number on Registry, 

September 30, 1998 

Number on Registry, 

December 31, 2001 

Percentage 

change

Percentage of 

donors on the 

Registry with 

known racea

Percentage of 

U.S. populationb

African American 264,868 363,246 37 10 12

Asian/Pacific Islander 194,118 287,129 48 8 4

Caucasian 1,926,675 2,460,725 28 7 69

Hispanic 252,569 386,059 53 11 13

Multiple race 34,443 76,937 123 2 2

Native American 45,478 59,112 30 2 1

Other 13,089 14,142 8 0c 0c

Declined to specify 4,629 6,498 40 N/A N/A

Unknownd

623,659 902,802 45 N/A N/A

Total 3,359,528 4,556,650 36 100 100

Note: N/A = not applicable. 

a

As of December 31, 2001. 

b

Based on 2000 U.S. Census. 

c

Rounds to zero. 

d

Some foreign registries that are part of the NMDP network do not collect information on race or 

ethnicity. 

Sources: NMDP and U.S. Bureau of the Census. 

The total of more than 1,000,000 minority donors listed in 2001 contrasts 

with the approximately 80,000 we reported in 1992. As can be seen in table 

1, by 2001, the proportions of both African Americans and Hispanics on 

the Registry were within 2 percentage points of their proportions in the 

2000 U.S. population. The proportions of other minorities on the Registry 

were either approximately equal to or exceeded their proportions in the 

population. While the differences between Registry and population levels 

of representation for African Americans and Hispanics reflect improved 

representation of these groups, the 2-percentage point differences still 

indicate a substantial underrepresentation in comparison with their 

proportions in the U.S. population. Specifically, in 1992, the proportions of 

African Americans and Hispanics, both at 4 percent of the Registry, were 8 

and 5 percentage points lower, respectively, than their proportions in the 

U.S. population (which were 12 and 9 percent, respectively). This 

translated to a 67 percent underrepresentation for African Americans and 

a 56 percent underrepresentation for Hispanics. The current 2-percentage 

point differences on the Registry for these groups translate to a 17 percent 
Page 13 GAO-03-182 Bone Marrow Transplants 

underrepresentation for African Americans and a 15 percent 

underrepresentation for Hispanics.19

For all racial and ethnic groups the theoretical probability of a patient’s 

finding at least one matched donor has increased every year since 1988 but 

has leveled off somewhat since 1998.20 The increase in theoretical 

probability represents significant progress in raising the likelihood of a 

match. It reflects inclusion in the Registry of the most common genetic 

types over the period when the Registry was small and new, and 

recruitment efforts were beginning. The leveling off likely reflects the fact 

that for all groups, after years of recruitment activity, improvement now 

occurs mainly when rare types are added. (See fig. 1.) 

 19For example, the African American difference of 2 percentage points is 17 percent of that 

group’s 12 percent share of the population. 

20This probability was computed in 2001 by considering all patients who had searched the 

Registry by that time and, using NMDP’s matching criteria, asking what proportion of these 

would have found a match during each year of the Registry’s existence, given the donors on 

the Registry during that year. This theoretical probability has advantages over the observed 

proportion of matches as a measure of access by patients. One is that a large and 

representative number of searching patients are repeatedly applied to the Registry over its 

history so that any fluctuations cannot be a result of fluctuations in the numbers or kinds 

of patients searching from year to year. Another advantage is that today’s definition of a 

match has been applied throughout the years covered so that any fluctuations cannot be a 

result of changes in that definition over the years. 

Theoretical Probability of 

Finding a Match Has 

Increased over Life of 

Registry 
Page 14 GAO-03-182 Bone Marrow Transplants 

Figure 1: Theoretical Probability of Patient’s Finding at Least One Matched Donor, 

by Racial and Ethnic Group, 1988 to 2001 

Source: NMDP. 

Nevertheless, the theoretical probability of finding a match varies by race, 

ranging in 2001 from under 60 percent for African Americans to over 80 

percent for Caucasians. This probability has always been higher for 

Caucasian patients than for patients in any minority group, in part, 

perhaps, because of Caucasians’ greater numbers and level of 

representation on the Registry. The theoretical probability of finding a 

matched donor has been lowest for African American patients. This is 

because, in addition to their smaller numbers and lower level of 

representation on the Registry, their rarer and more varied HLA 

combinations make matching harder. 
Page 15 GAO-03-182 Bone Marrow Transplants 

Because of genetic differences among racial and ethnic groups, there is 

reason to believe that patients from some minority groups, notably African 

Americans, may never have the same probability of finding matches, and 

therefore of access to transplants, as Caucasian patients, regardless of the 

efforts made to recruit them. Any patient is more likely to find a match in 

his or her own racial and ethnic group than in another group, so patient 

matching rates depend, to some extent, on the number of people in the 

patient’s group on the Registry. All minorities are at a disadvantage for this 

reason. Further, some minority groups, such as African Americans, are 

known to have more rare and more varied HLA combinations than do 

Caucasians. The likelihood of finding a match from among a group of 

racially or ethnically defined donors declines with the rarity and number 

of possible genetic types found among the members of that group. 

In addition to these factors related to finding a match, there are other 

factors that may contribute to differences in access to a transplant. Some 

of these depend on the characteristics of those who volunteer for the 

Registry. For example, donors from different groups may differ in their 

tendency to be available (locatable, willing, and physically able) when 

called upon to actually donate. Other possible factors involve the 

attitudes, health, medical care, resources, and preferences of the patients. 

Patients of different groups may differ in their tendency to engage the 

health care system at all, to seek help early enough in their illnesses, or to 

search the Registry as opposed to pursuing other options. It may be 

possible to effect changes in these factors, thereby moving closer to the 

goal of equal opportunity for all racial and ethnic groups. 

However, not only is the goal of equal access to transplants for all groups 

difficult to attain, but it also may conflict with the statutory goal of 

maximizing the number of patients who find a match and thereby 

maximizing the number of transplants facilitated. Recruiting donors with 

the rare HLA combinations that may be needed for minorities is difficult. 

Large numbers of donors must be recruited and retained in the Registry in 

order to identify and add each rare genetic type to the donor pool, so the 

cost of recruiting such donorsthe incremental cost of adding these rare 

genetic types to the donor poolis large. Thus, devoting many resources 

in pursuit of a small number of rare genetic types may divert resources 

from other efforts, such as recruiting Caucasians and other groups with 

more common genetic types, which might more readily increase the 

number of matches. 

Because of the difficulty encountered in finding matches for minority 

patients, NMDP engages in a number of initiatives to increase the 

Equal Access for All 

Groups May Be 

Unattainable 
Page 16 GAO-03-182 Bone Marrow Transplants 

Registry’s diversity. It conducts outreach, recruitment, and educational 

efforts directed towards minorities. In addition, NMDP has initiated a 

program to pay the full costs of HLA tissue typing for minority donors. 

Although the difficulty in finding matches for minority patients may be 

unavoidable, it may be mitigated somewhat by the efforts of the Registry 

to increase the number of donors on whom it has complete HLA typing. 

The vast majority of actual donations are obtained from by donors whose 

HLA is fully typed.21 When only these donors are considered, each minority 

constitutes a larger portion of the Registry than its representation in the 

population. Therefore, because access to a match depends upon, for the 

most part, the fully typed donors on the Registry, access for minorities 

may be somewhat better than might be assumed by looking at the Registry 

as a whole. 

Although the exact number of patients in need of transplants from 

unrelated donors is not known, the number of patients utilizing the 

Registry to search for matches is about one-third of the estimated number 

of patients in need of unrelated donor transplants. About one-tenth of the 

number of patients estimated to be in need of unrelated donor transplants 

obtain transplants facilitated by NMDP. These figures suggest that the 

Registry may be underutilized for both searching and facilitating 

transplants.22 Physicians for approximately 15,000 U.S. patients requested 

preliminary searches of the Registry from 1997 through 2000. This number 

represents 34 percent of the 44,740 U.S. patients estimated to be in need of 

stem cell transplants from unrelated donors in that 4-year period. About 

4,000, or 27 percent, of the patients whose physicians searched the 

Registry eventually received transplants facilitated by NMDP. However, a 

significant proportion of searches were not completed because stem cells 

were obtained from donors or organizations without the involvement of 

NMDP. 

 21A fully typed donor is one for whom all crucial antigens are determined at the time the 

donor volunteers. 

22See app. I for an explanation of how we estimated the number of patients in need. 

National Registry May 

Be Underutilized 
Page 17 GAO-03-182 Bone Marrow Transplants 

From 1997 through 2000, physicians carried out preliminary searches for 

34 percent of the number of U.S. patients estimated to be in need of 

transplantation from unrelated donors at any time during that period. The 

number of transplants facilitated by NMDP for all U.S. patients was 9 

percent of the number estimated to be in need. The precise number of 

patients in need of unrelated donor transplants is not known. However, 

there is a greater than 10 to 1 ratio between the number of such patients 

estimated to be in need and the number of transplants facilitated by 

NMDP. This suggests that the Registry may be underutilized, as many 

more U.S. patients may need unrelated donor transplants than obtain them 

through the Registry.23 The ratio of the number of preliminary searches to 

the number of patients in need varied by race and ethnicity. Among 

specific racial and ethnic groups, the percentage of preliminary searches 

was highest for Caucasian patients (35 percent), and was lowest for 

Hispanic patients (24 percent) and Native American patients (24 percent). 

(See table 2.) We do not know why these apparent disparities in search 

rates exist. 

 23NMDP has used a similar method of estimation and draws a similar conclusion about 

possible underutilization. 

Estimates Suggest about 

One-Third of Patients in 

Need Search the Registry 

and about One-Tenth 

Receive Transplants 
Page 18 GAO-03-182 Bone Marrow Transplants 

Table 2: U.S. Patients’ Utilization of the Registry, by Race and Ethnicity, 1997 to 2000 

Race/ethnicity 

Estimated 

number of 

patients without 

matched sibling 

donora

 

(patients in need)

Actual 

number of 

preliminary 

searches 

Ratio of number 

of preliminary 

searches to 

number of 

patients in need 

Actual number 

(percentage) of 

preliminary 

searches 

resulting in 

formal 

searches 

Actual number 

(percentage) of 

preliminary 

searches 

resulting in 

NMDPfacilitated 

transplants

Ratio of 

number of 

NMDPfacilitated 

transplants to 

number of 

patients in 

need

African American 5,397 1,694 0.31 958 (57) 256 (15) 0.05

Asian/Pacific Islander 1,666 439 0.26 270 (62) 96 (22) 0.06

Caucasian 30,929 10,844 0.35 7,079 (65) 3,321 (31) 0.11

Hispanic 5,613 1,366 0.24 840 (61) 317 (23) 0.06

Native American 329 80 0.24 56 (70) 20 (25) 0.06

Other 806 365 0.45 213 (58) 39 (11) 0.05

Total 44,740 15,231b 0.34 9,623 c (63) 4,056d (27) 0.09

a

For Caucasians, the number of HLA-identical sibling transplants multiplied by the number of patients 

expected to be without matched sibling donors for each such transplant was derived from data 

obtained from the Statistical Center of the IBMTR and Autologous Blood and Marrow Transplant 

Registry (ABMTR). (The analysis has not been reviewed or approved by the Advisory Committees of 

the IBMTR and ABMTR.) See appendix I for a description of this method of estimation. For each of 

the other groups, the number was derived by assuming that the group’s need is the same as it is for 

Caucasians and in proportion to the group’s representation in the U.S. population. 

b

Includes 443 preliminary searches, not included elsewhere in the column, from patients of unknown 

race/ethnicity. 

c

Includes 207 formal searches, not included elsewhere in the column, from patients of unknown 

race/ethnicity. 

d

Includes 7 transplants, not included elsewhere in the column, from patients of unknown 

race/ethnicity. 

Source: GAO analysis of data from the Statistical Center of the IBMTR and ABMTR and NMDP. 

About one-fifth of the number of patients estimated to be in need formally 

searched the Registry (9,623 out of 44,740). Less than one-tenth of those 

estimated to be in need ultimately received NMDP-facilitated transplants. 

The numbers and percentages of preliminary searches that progressed to 

formal searches from 1997 through 2000 are presented by racial and ethnic 

group in table 2. The overall rate of progression from preliminary to formal 

search is 63 percent. Further, 4,056 of the 15,231 U.S. patients (27 percent) 

for whom preliminary searches were conducted from 1997 through 2000 

eventually received NMDP-facilitated transplants. This number 

corresponds to 9 percent of the number of patients estimated to be in need 

of unrelated transplants during that period. 
Page 19 GAO-03-182 Bone Marrow Transplants 

Reasons for cancellation of preliminary searches or formal searches vary. 

Although clinical reasons, such as a change in medical condition, are the 

most commonly cited explanations for cancellation of both preliminary 

and formal searches,24 another relatively frequent reason is that stem cells 

are obtained from a provider other than NMDP, such as a related donor or 

another registry. (See tables 3 and 4.) We do not know the proportion of 

these cases that used a related donor, and some cases may not have been 

able to find a potential match at NMDP. However, it is likely that in at least 

some of these cases, NMDP might have facilitated a transplant if the 

patient’s transplant center had not selected another registry to provide the 

stem cells, thus representing another kind of possible underutilization of 

NMDP. Lack of donor availability—not finding any potential matches—

and financial reasons are not commonly cited as reasons for cancellation 

of either kind of search, although it is possible that patients with limited 

financial resources or insurance may not be encouraged to make 

preliminary searches. 

Table 3: Reasons for Preliminary Search Cancellation, January 2000 through 

September 2001 

Reason for cancellation 

Number of preliminary 

search cancellations 

Percentage of preliminary 

search cancellations 

No donor available 105 7 

Another provider 317 20 

Patient stable 383 25 

Financial reasons 114 7 

Personal reasonsa 187 12 

Deterioration/death 160 10 

Other 284 18 

Total 1,550 100 

Note: These data are based on a survey, conducted by OPA, of individuals making preliminary 

searches. 

a

Personal reasons for preliminary search cancellations include decisions made by physicians and 

patients. 

Source: NMDP. 

 24Cancellation of a preliminary search means that 45 days have occurred since the search 

without a formal search having been initiated. Cancellation of a formal search means that 

the transplant center has submitted a particular form indicating a desire to terminate the 

search and included a reason for doing so. 

Reasons for Cancellation 

Vary and Include Obtaining 

Stem Cells from a Provider 

Other than NMDP 
Page 20 GAO-03-182 Bone Marrow Transplants 

Table 4: Reasons for Formal Search Cancellation, 1997 to 2000 

Reason for cancellation 

Number of formal search 

cancellations 

Percentage of formal 

search cancellations

No donor available 131 3

Another provider 1,200 25

Financial reasons 22 0

Personal reasonsa 733 15

Deterioration/death 2,096 44

Alternative therapy 357 7

Other 262 5

Total 4,801 100

a

Personal reasons for formal search cancellations include decisions made by physicians, patients and 

patients’ families. 

Source: NMDP. 

Several factors may influence a decision to obtain stem cells from a 

provider outside the NMDP network, including the source of stem cells 

preferred by the physician, the costs involved, and the timeliness of the 

response. Outside providers may need to be used when the physician sees 

cord blood as a viable alternative source to bone marrow or PBSC because 

some cord blood banks do not list their cord blood units with NMDP.25

Search and procurement costs can also be a factor. Administrators of 

transplant centers that have done non-NMDP-affiliated transplants told us 

that other registries charge less for searches than NMDP does. For 

example, we were told that only a few other registries worldwide charge a 

search activation fee in addition to their charges for the specific medical 

procedures needed to confirm that a particular donor is healthy and 

matched to the patient. In addition, the cost of stem cell procurement at 

NMDP tends to be higher. One transplant center director told us that the 

center pays about $13,000 for stem cells obtained directly from overseas 

registries and about $21,000 for NMDP stem cells. However, even when 

NMDP is not paid for a formal search or for stem cells, it may still have 

been utilized. An official at NMDP informed us that it is possible for a 

transplant center to determine the NMDP-affiliated registry at which a 

foreign (but not domestic) potential match is registered on the basis of a 

 25Although several blood banks list their cord blood units with NMDP, others, including the 

largest, the New York Blood Center, do not, and thus NMDP cannot facilitate transplants 

from those banks. 
Page 21 GAO-03-182 Bone Marrow Transplants 

preliminary search and to contact the foreign registry directly to obtain the 

stem cells. Moreover, that official stated that some transplant centers may 

do this regularly. Thus, although NMDP may not be recorded as having 

facilitated the transplants that result, its role in helping to locate donors in 

such cases means that its utilization is somewhat greater than the record 

suggests. 

Timeliness can be another factor. A few center administrators mentioned 

that NMDP takes longer to provide stem cells than do other registries. For 

example, one administrator told us that the time it takes to obtain a donor 

sample for testing at the transplant center—an important component of 

the overall search process—can be a week longer for NMDP than for a 

foreign registry, depending on whether NMDP judges the search to be 

urgent. Waiting this additional week can be frustrating for those at the 

transplant center who are anxious to determine whether they have a 

confirmed match or will have to continue searching. Another director told 

us that stem cells from non-NMDP providers are more likely to be received 

by the date the transplant center requests them than are stem cells from 

NMDP. NMDP has attempted to shorten its time from formal search 

initiation to transplant and reports that its median time has decreased 

from 4.8 months from 1992 through 1993 to 3.7 months in 2000. The 

optimal time frames for patients vary. Some may not be urgent, but NMDP 

has shown that it is possible to complete urgent searches in less than a 

month and reports that it expects to begin offering urgent searches as an 

option to transplant centers. 

Organizations that participate in the NMDP network generally comply with 

the standards and procedures it has established. In order to encourage 

adherence, NMDP uses various mechanisms to monitor compliance and 

performance. These include site visits, the Continuous Process 

Improvement (CPI) program, and incident reports, as well as a financial 

incentive system designed to improve the performance of donor centers. 

The results of the selected site visits, analysis of CPI measures, and 

incident report summaries we reviewed show that the organizations in the 

NMDP network generally adhere to NMDP’s standards and procedures. In 

general, NMDP ensures compliance by taking action against noncompliant 

organizations. (See app. II for examples of how NMDP uses these systems 

to achieve compliance with respect to selected activities.) In 2001, NMDP 

required 24 donor and transplant centers to take corrective actions 

because they did not meet its standards. The incentive system encourages 

compliance by linking donor center reimbursement to performance. 

Organizations in the 

NMDP Network 

Generally Comply 

with Its Standards and 

Procedures 
Page 22 GAO-03-182 Bone Marrow Transplants 

NMDP uses several mechanisms to encourage the compliance and 

performance of the participating organizations in its network. NMDP staff 

members conduct site visits to donor centers to monitor the centers’ 

compliance with NMDP’s standards and procedures and to provide 

feedback about the results. It also employs the CPI program to assess and 

provide feedback at donor, transplant, and bone marrow collection 

centers. Further, NMDP monitors incident reports from donor, transplant, 

and collection centers and may take corrective action including, in serious 

cases, suspension or termination. 

According to NMDP officials, NMDP staff members conduct site visits at 

donor centers approximately every 2 years to assess donor center 

compliance with program standards and procedures. NMDP staff members 

review the organization of the program (such as its support and staffing 

structure), recruitment activities (such as performance against goals and 

donor drive compliance), donor management activities (such as 

management of patient-related donor search requests, confidentiality 

procedures, and records management), and billing and reimbursement to 

determine adherence to NMDP’s standards and procedures. They also 

compare performance against goals for various recruitment activities. 

Upon completion of these visits, NMDP staff members discuss the results 

with the center staff and provide a summary report. Centers that are 

noncompliant are advised of the problems and are required to submit 

corrective action plans to NMDP that address the problems. Our review of 

donor center site visit reports indicates that the reports identified 

problems and the corrective actions required of the centers to meet NMDP 

criteria. 

Since 1998, NMDP has conducted additional site visits at transplant 

centers to verify the accuracy of the data that the transplant centers 

submit electronically to NMDP. NMDP staff members compare the data 

from the centers’ records with the data from NMDP’s computer system. 

During these visits, NMDP staff members may also review other activities, 

such as the signing of patient consent forms. The site visits are scheduled 

for each transplant center every 4 years. NMDP plans to issue its first 

annual report on the results of the first cycle of site visits in September 

2002. 

NMDP monitors the operations and performance of its centers through the 

CPI program. The program includes nine goals to increase the efficiency of 

key activities in the search and donation process and measures 

performance against these goals. For example, at donor centers, NMDP 

measures the timeliness of registering new donors, resolving searchNMDP Monitors Network 

Compliance and 

Performance 
Page 23 GAO-03-182 Bone Marrow Transplants 

related requests, and processing requests for HLA blood typing. At 

transplant centers, NMDP measures the time it takes to resolve and report 

confirmatory testing results. NMDP also monitors post-transplant data 

submission through CPI. These outcome data are used in research studies 

to analyze outcomes for donors and patients. NMDP also monitors the 

accuracy and timeliness with which donor and transplant centers submit 

donor and patient blood samples to NMDP’s research repository. NMDP 

provides regular feedback to donor and transplant centers concerning 

their performance on CPI measures. For example, each center receives a 

monthly report summarizing the results of its activities, along with those 

of all other centers, in the previous month. The reports allow centers to 

analyze how consistently they perform and to compare their results to 

those of other centers in the network. NMDP also conducts a year-end 

analysis to provide feedback to centers. 

Through its CPI program, NMDP monitors whether organizations in its 

network meet goals for timeliness and may recommend corrective actions 

for centers that do not meet these goals.26 A year-end analysis of the CPI 

program shows that during 2001 almost half (44 of 91) of donor centers 

met all nine CPI goals for the search process. In addition, 20 more donor 

centers met eight of nine goals, and 9 others met seven of nine goals. 

According to NMDP, the remaining 18 donor centers (20 percent) that met 

six or fewer goals were the focus of technical assistance to improve their 

performance. Our analysis shows that 5 of the 91 donor centers (5 

percent) were placed on review or probation for failing to meet CPI goals 

in 2001. 

Our analysis also shows that NMDP placed 18 of the 129 transplant centers 

(14 percent) on probation. Eight of these were placed on probation for 

failure to meet CPI goals for the search process, seven for failure to meet 

CPI measures concerned with timely submission of recipient follow-up 

information, and three for problems related to the accuracy and timeliness 

of submissions of donor and patient research blood samples. 

NMDP supplements these activities with incident reports, which are 

written accounts of deviations from policies and standards that are 

categorized by the nature of a deviation and include, but are not limited to, 

 26Under CPI, NMDP allows up to three notices of noncompliance with a particular standard 

and sets interim goals to be met within a specified review period after each notice. After a 

third notice, centers are placed on probation. Failure to meet the requirements of the 

probationary period may result in termination. 
Page 24 GAO-03-182 Bone Marrow Transplants 

categories such as confidentiality concerns, customer service, and product 

transport. NMDP uses incident reports to track deviations from its 

standards by recording the specifics of incidents. NMDP staff members 

follow up and investigate incidents. In addition, an NMDP committee 

reviews a summary report of incidents twice a year to identify developing 

trends that may affect an individual center or the entire network. Since 

NMDP reviews center participation annually, the committee may follow up 

on deviations from NMDP’s standards or take action such as probation, 

suspension, or termination during the reapplication process. We reviewed 

a summary of incidents categorized by type of problem and the corrective 

actions taken to resolve them. For example, one incident involved an 

operating room staff member administering less appropriate blood, rather 

than the donor’s own blood, which was available for that purpose, during a 

marrow harvest. NMDP monitored an investigation at the hospital to 

ensure that the problem would be addressed. 

To improve the operation of its donor centers, NMDP ties their 

reimbursement to their performance. In 1997, NMDP instituted a new 

reimbursement system that links payment to performance on CPI goals for 

all donor centers.27 NMDP pays donor centers a fee for each activity to 

recruit donors for the Registry, such as signing up donors, typing their 

tissues, maintaining their files, and other activities related to confirming 

that the donors identified as potential matches for a searching patient 

actually match and are medically cleared for donation. NMDP pays each 

donor center a recruitment fee of $28 and $10 for every minority and 

Caucasian donor, respectively, recruited up to the number specified in its 

recruitment goal. NMDP establishes annual recruitment goals for each 

donor center based on the demographics of the local population. When 

donors are recruited, the donor centers that do not register a specific 

percentage of the new donors within a certain period incur financial 

penalties. For example, the CPI goal for registering new donors is to 

register at least 85 percent of them within 35 days of the date on which 

they volunteer. NMDP would reduce the total recruitment fee it pays to 

donor centers that register less than 85 percent of new donors within this 

time frame. NMDP data show that in May 2001, 98 percent of all donor 

 27The HHS OIG recommended that HRSA standardize contracts between NMDP and donor 

centers for donor services to improve the cost efficiency of the centers and to link payment 

to performance. HRSA included this requirement in its 1997 contract with NMDP to operate 

the Registry. 

Donor Center 

Reimbursement Is Linked 

to Performance 
Page 25 GAO-03-182 Bone Marrow Transplants 

centers met this goal. In addition, NMDP pays incentives to donor centers 

for retaining donors at various points in the donation process. 

In spite of progress in recruiting minority donors, racial and ethnic 

disparities in the Registry remain, due in part to differences in the genetic 

variability within groups. Thus, differences among racial and ethnic groups 

in the probability of obtaining transplants will likely continue. Many in 

need of transplants may not search the Registry; those that do often do not 

obtain them, and for those that obtain them, the transplants may not be 

facilitated by NMDP. Although NMDP enhances the quality of its network 

by actively monitoring the compliance and performance of the component 

organizations, it has not attained the level of utilization that might be 

expected. 

In its written comments on a draft of this report, HRSA stated that the 

report provides an accurate and helpful overview of the status of the 

National Bone Marrow Donor Registry. HRSA agreed that recruitment of 

donors cannot be the sole strategy for improving access to unrelated 

donor transplants for minority patients or those with unusual antigens, 

and cited the need for other efforts to supplement recruitment activities. 

However, HRSA noted that the Registry consists of two distinct groups of 

donors, those who are fully HLA typed and those who are less than fully 

typed. Since the vast majority of actual donors are selected from the fully 

typed portion, minority racial and ethnic groups therefore make up a 

larger proportion of the Registry than their representation in the U.S. 

population. We have noted in the report that, because of this, access for 

minorities may be somewhat better than might be assumed by looking at 

the Registry as a whole. 

With regard to underutilization of the Registry, HRSA agreed that many 

patients who could benefit from unrelated donor transplants never consult 

the Registry or do so too late in the course of their illnesses. HRSA 

suggested a slightly modified method for estimating the number of patients 

in need. We modified table 2 in accordance with its suggestions, but note 

that both approaches produce virtually identical estimates of overall 

utilization. (See app. I.) 

Finally, HRSA noted that many factors affect the time required to complete 

a search of the Registry. While searches frequently take many months and 

the median search time has decreased, NMDP has completed medically 

urgent searches in less than a month, on a pilot basis, and reports that it 

Concluding 

Observations 

Agency Comments 
Page 26 GAO-03-182 Bone Marrow Transplants 

expects to begin offering urgent searches as an option to transplant 

centers. We have revised the report to include this clarification. HRSA also 

provided technical comments, which we incorporated as appropriate. 

HRSA’s comments are reprinted in appendix III. 

We are sending this report to the Administrator of HRSA, the NMDP Chief 

Executive Officer, and other interested persons. We will also make copies 

available to others upon request. In addition, the report will be available at 

no charge on the GAO Web site at http://www.gao.gov. 

If you or your staff members have any questions about this report, please 

call me at (202) 512-7119. Key contributors to this assignment are listed in 

appendix IV. 

Janet Heinrich 

Director, Health Care—Public Health Issues 
Page 27 GAO-03-182 Bone Marrow Transplants 

List of Committees

The Honorable Robert C. Byrd 

Chairman 

The Honorable Ted Stevens 

Ranking Minority Member 

Committee on Appropriations 

United States Senate 

The Honorable Edward M. Kennedy 

Chairman 

The Honorable Judd Gregg 

Ranking Minority Member 

Committee on Health, Education, 

 Labor, and Pensions 

United States Senate 

The Honorable C.W. Bill Young 

Chairman 

The Honorable David Obey 

Ranking Minority Member 

Committee on Appropriations 

House of Representatives 

The Honorable W.J. “Billy” Tauzin 

Chairman 

The Honorable John D. Dingell 

Ranking Minority Member 

Committee on Energy and Commerce 

House of Representatives 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 28 GAO-03-182 Bone Marrow Transplants 

Registry utilization is the extent to which patients in need of unrelated 

stem cell transplants search the Registry or obtain NMDP-facilitated 

transplants. In determining utilization, it is necessary to use indirect 

methods to calculate the number of patients in need because it is 

impossible to determine this number directly. For example, although we 

may be able to obtain data on the number of patients who have been 

diagnosed with certain blood and immune system diseases, we are unable 

to determine the number for whom stem cell transplants are the best 

treatment. 

One measure of the utilization of the Registry is the extent to which the 

number of patients obtaining transplants facilitated by the Registry is as 

high as it could be. The maximum possible utilization of the Registry 

would be indicated if the number of U.S. patients conducting preliminary 

searches was approximately equal to the estimated number of patients 

needing unrelated donor transplants. A second measure of utilization is 

the extent to which patients search the Registry. 

The method we used to assess the two aspects of utilization—searching 

the Registry and obtaining an NMDP-facilitated transplant—is also used by 

NMDP. It involves estimating the number of patients in need of unrelated 

donor transplants by using data on the number of HLA-identical sibling 

transplants obtained from IBMTR.1

 This method and two alternative 

methods that are also used by NMDP to assess utilization by U.S. patients, 

one based on the number of preliminary searches conducted and the other 

based on the incidence of disease, are described here. 

For the years from 1997 through 2000, we estimated the number of 

Caucasian patients in need of unrelated donor transplants based on the 

average annual number of Caucasian HLA-identical sibling transplants 

performed during those years. To obtain this estimate, we multiplied the 

number of HLA-identical sibling transplants, for Caucasians, by the 

number of patients of that group that genetic theory predicts—on the basis 

of the average number of children born to the women of that group—are 

 1

This registry, located in Milwaukee, registers bone marrow transplants, not donors like the 

other registries discussed in this report. The data used in our estimations were obtained 

from the Statistical Center of IBMTR and Autologous Blood and Marrow Transplant 

Registry (ABMTR). The analysis has not been reviewed or approved by the Advisory 

Committees of the IBMTR and ABMTR. 

Appendix I: Methods of Assessing Registry 

Utilization 

Method Based on 

Number of HLAIdentical Sibling 

Transplants 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 29 GAO-03-182 Bone Marrow Transplants 

in need of unrelated donor transplants for every Caucasian HLA-identical 

sibling transplant in the United States. 

The average number of children born to Caucasian women over a lifetime 

during the years from 1989 through 1995 was 1.7925.2

 Subtracting the 

individual who is in need of a transplant gives n = 0.7925 as the number of 

siblings available to be transplant donors. The likelihood of a match 

between two siblings is 25 percent because each child inherits one-half of 

each parent’s HLA genes, resulting in a one out of four chance of having 

the same HLA genes as a sibling has. Therefore, the probability that no 

sibling HLA identically matches the one in need is P = (0.75)n

. For a 

Caucasian patient, P = (0.75)0.7925 = 0.796134. 

The number of patients in need of unrelated stem cell transplants is equal 

to the number of sibling donor transplants multiplied by P/(1 − P). 

Therefore, for every HLA-identical sibling transplant recorded for a 

Caucasian patient, there will be 0.796134/(1 − 0.796134) = 3.90518 patients 

in need of unrelated donor transplants. Because there were 7,920 sibling 

transplants performed for Caucasian patients from 1997 through 2000, we 

estimate that 3.90518(7,920) = 30,929 Caucasian patients were in need of 

stem cell transplants during that period. The estimates for other racial and 

ethnic groups are presented in table 2. Because minorities generally have 

less access to health care3

 and may therefore have less access to sibling 

transplants specifically, these estimates were obtained by assuming that 

 2

We determined this average by taking the median Caucasian fertility rate for the years 

from 1989 through 1995. Fertility rates for non-Hispanic Caucasians were not available for 

earlier years. We did not include rates for years after 1995 because we do not think many of 

the transplants occurring during the years 1997 through 2000 were done for patients born 

after 1995. Because fertility rates tended to be higher before about 1973, when some of the 

patients seeking transplants during the period of our analysis, 1997 through 2000, were 

born, the use of the 1989 through 1995 rates results in an underestimation of the average 

number of siblings and a consequent overestimation of the number of patients in need of 

unrelated donor transplants. The effect of this consideration of the 1989 through 1995 rates 

is counterbalanced to an unknown extent because (1) the fertility rates count half siblings 

and dead siblings as well as living full siblings and (2) the fertility rates count all of a 

woman’s live births, including those that occur after the patient needs a transplant. The 

effect of these two counterbalancing considerations is to overestimate of the number of 

siblings available to donate and underestimate the number of patients in need. The net 

effect of the choice of 1989 through 1995 rates and the considerations concerning the 

fertility rates on the estimation of the number of patients in need is not known. 

3

See, for example, R.M. Mayberry, F. Mili, and E. Ofili, “Racial and Ethnic Differences in 

Access to Medical Care,” Medical Care Research and Review, vol. 57, Supplement 1 (2000), 

pp. 108-145. 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 30 GAO-03-182 Bone Marrow Transplants 

each minority group’s need for unrelated donor transplants is proportional 

to the Caucasian group’s need. The estimates were obtained by multiplying 

the number of persons in the minority group by the proportion of 

Caucasians in need of unrelated donor transplants. This approach 

implicitly assumes that differences across groups in fertility rates are of 

negligible importance in computing the numbers of patients in need of 

unrelated donor transplants. 

An alternative approach assumes that minorities and Caucasians have 

equal access to HLA-identical sibling transplants. Based on this 

assumption, this approach derives the needs of minorities for unrelated 

donor transplants directly from their observed numbers of HLA-identical 

sibling transplants. In doing so, it allows for the possibility that each group 

has its own disease incidence rates and that the differences among groups 

in their relative levels of sibling donations reflect these rates, not 

differences in access. (See table 5.) This approach, while utilizing 

somewhat different assumptions from the method above, produces a 

virtually identical estimate of the underutilization of the Registry (10 

percent versus 9 percent). 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 31 GAO-03-182 Bone Marrow Transplants 

Table 5: Alternate Approach to the Analysis of U.S. Patients’ Utilization of the Registry, by Race and Ethnicity, 1997 to 2000 

Race/ethnicity 

Estimated 

number of 

patients without 

matched sibling 

donora,b

(patients in need) 

Actual 

number of 

preliminary 

searches 

Ratio of 

number of 

preliminary 

searches to 

number of 

patients in 

need 

Actual number 

(percentage) of 

preliminary 

searches 

resulting in 

formal 

searches 

Actual number 

(percentage) of 

preliminary 

searches 

resulting in 

NMDPfacilitated 

transplants

Ratio of 

number of 

NMDPfacilitated 

transplants to 

number of 

patients in 

need

African American 1,880 1,694 0.90 958 (57) 256 (15) 0.14

Asian/Pacific Islander 1,355 439 0.32 270 (62) 96 (22) 0.07

Caucasian 35,964 10,844 0.30 7,079 (65) 3,321 (31) 0.09

Hispanic 1,593 1,366 0.86 840 (61) 317 (23) 0.20

Native American 97 80 0.82 56 (70) 20 (25) 0.21

Other 290 365 1.26 213 (58) 39 (11) 0.13

Total 41,179 15,231c 0.37 9,623 (63) 4,056 (27) 0.10

Note: This table presents an alternate approach to that given in table 2. 

a

Number of HLA-identical sibling transplants multiplied by the number of patients expected to be 

without matched sibling donors for each such transplant was derived from data obtained from the 

Statistical Center of the IBMTR and Autologous Blood and Marrow Transplant Registry (ABMTR). 

(The analysis has not been reviewed or approved by the Advisory Committees of the IBMTR and 

ABMTR.) 

b

Numbers based on the HLA-identical sibling transplants of the designated race/ethnicity plus a 

portion of those of unknown race/ethnicity. These unknowns submitted record forms that did not ask 

about race/ethnicity. The unknowns can be assumed to be similar in racial/ethnic distribution to the 

other patients, and so we distributed them among the racial/ethnic groups according to that 

distribution. It can therefore be assumed that there is no racial bias in this estimation method. 

c

Includes 443 preliminary searches, not included elsewhere in the column, from patients of unknown 

race/ethnicity. 

Source: GAO analysis of data from the Statistical Center of the IBMTR and ABMTR and NMDP. 

The second method used by NMDP to assess Registry utilization is based 

simply on the annual number of patients conducting preliminary searches. 

In order to use this method, one must assume that this number directly 

represents those in need of unrelated donor transplants. One cannot 

assess the extent to which those in need search the Registry on the basis 

of this number since the number itself is the number of patients searching. 

However, one can assess the extent to which those in need obtain NMDPfacilitated transplants by considering the annual percentage of patient 

searches that result in NMDP-facilitated transplants. This method yields an 

estimate of the patients searching who obtain NMDP-facilitated 

transplants of 27 percent. (See table 5.) 

Method Based on 

Number of 

Preliminary Searches 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 32 GAO-03-182 Bone Marrow Transplants 

Although this approach has been used by NMDP as a way of assessing 

utilization, officials at NMDP observe that the validity of this approach to 

utilization assessment is limited by the freedom with which patients can 

choose whether to search. These officials point out that preliminary 

searches are performed for some patients who are not good candidates for 

transplant and that other patients who should submit preliminary searches 

probably do not. Because of the lack of correspondence between the 

number of patients in need and the number performing preliminary 

searches, this estimate is not likely to be as accurate as the other two. 

The third method used by NMDP is based on an estimate of the annual 

number of U.S. patients newly diagnosed from 1997 through 2000 with 

selected diseases that might benefit from unrelated stem cell transplants.4

The estimated number of potential recipients for each disease is obtained 

from disease incidence estimates, with adjustments for the likelihood that 

(1) the patient is young enough to benefit from transplantation, (2) disease 

severity is not so great as to make transplantation futile, and (3) an HLAidentical sibling donor is available, thereby making unrelated donor 

transplant unnecessary. The ratio of the annual number of NMDPfacilitated transplants for U.S. patients diagnosed with these selected 

diseases during this period to the estimated number of new U.S. patients 

with the diseases is used to assess utilization.5

 (See table 6.) The ratio, for 

all patients with the selected diseases, corresponds to an estimated 

percentage of candidates obtaining transplants—10 percent—that is very 

close to the estimate obtained by the first method. The validity of this third 

method is constrained by the limited number of diseases for which data 

are available. 

 4

R.P. Gale, “Potential Utilization of a National HLA-Typed Donor Pool for Bone Marrow 

Transplantation,” Transplantation, vol. 42, no. 1 (1986), pp. 54-58. 

5

We have not related the number of potential recipients estimated in this third way with the 

numbers of preliminary searches for patients with the selected diseases, only with the 

numbers of transplants. 

Method Based on 

Incidence of Disease 
Appendix I: Methods of Assessing Registry 

Utilization 

Page 33 GAO-03-182 Bone Marrow Transplants 

Table 6: Average Annual Unrelated Donor NMDP-Facilitated Transplants and Estimated Number of Potential Recipients for 

U.S. Patients with Selected Diseases Who Might Benefit from Unrelated Stem Cell Transplants, by Race/Ethnicity, 1997 

through 2000 

Race/ethnicity 

Acute 

lymphocytic 

leukemia 

Acute 

myelogenous 

leukemia 

Chronic 

myelogenous 

leukemia

NonHodgkin’s 

lymphoma Total

African American 8 12 18 4 42

Caucasian 121 197 161 68 547

Hispanic 24 12 14 2 52

Native American 1 1 1 0 3

Asian/Pacific Islander 6 5 4 1 16

Other 2 1 2 0 5

Total number of NMDP-facilitated transplants 162 228 200 75 665

Estimated number of new U.S. patients with 

selected diseases who might benefit from 

unrelated stem cell transplants 1,359 662 761 4,081 6,863

Percentage of new patients who receive NMDPfacilitated transplants 12 34 26 2 10

Sources: GAO analysis of data from NMDP and the National Cancer Institute’s Surveillance, 

Epidemiology, and End Results program. 
Appendix II: How NMDP Achieves Network 

Compliance with Selected Standards and 

Procedures 

Page 34 GAO-03-182 Bone Marrow Transplants 

NMDP requires that the organizations participating in its network comply 

with its standards and procedures. This appendix discusses how NMDP 

achieves the compliance by network organizations with standards and 

procedures for obtaining the informed consent of donors and patients, 

donor selection criteria, confidentiality of records, collection and 

transportation of marrow, laboratory standards, and maintenance of donor 

files in the Registry. 

At each stage of the search process, NMDP requires donors to sign 

informed consent statements for procedures performed at the donor and 

transplant centers.1

 A volunteer must sign an informed consent form 

before being listed as a donor on the Registry, and also before the 

collection of blood for initial and follow-up testing, infectious disease 

testing, and participation in research. In addition, consent must be 

obtained before notifying the transplant center that a donor is willing to 

proceed to marrow donation and before the administration of anesthesia. 

Consent must also be obtained before collecting blood specimens for 

research and before any proposed procedure for which the donor has not 

previously given consent. 

According to NMDP officials, during each donor center site visit, NMDP 

staff members review about 35 randomly selected donor files. NMDP staff 

members check that each donor has signed all appropriate consent forms 

for the stages of the recruitment and search process the donor has 

completed. According to an NMDP official, since NMDP began performing 

site visits in 1998, missing or unsigned donor consent forms occurred in 

only a few cases, indicating that a high level of compliance has been 

achieved. The number of missing consent forms is not readily available 

because cumulative data are not permanently stored. Transplant centers 

are responsible for obtaining informed consent from each transplant 

patient, for collecting research blood samples that are sent to the NMDP 

repository, and for submitting baseline and follow-up data to the Registry. 

Some of the centers have separate consent forms specifically for the 

research samples and clinical data, whereas others incorporate consent 

for the research samples and clinical data into the informed consent 

document the patient signs for the transplant. 

 1

Informed consent refers to the process of helping an individual weigh the risks against the 

benefits of a procedure or treatment. By signing a form, an individual consents to undergo 

a procedure after being fully informed of the risks and benefits. 

Appendix II: How NMDP Achieves Network 

Compliance with Selected Standards and 

Procedures 

Informed Consent of 

Donors and Patients 
Appendix II: How NMDP Achieves Network 

Compliance with Selected Standards and 

Procedures 

Page 35 GAO-03-182 Bone Marrow Transplants 

NMDP is currently collecting information on how transplant centers are 

handling the informed consent process for the research samples and 

clinical data submitted to NMDP. This information will be analyzed, and 

NMDP will evaluate whether changes in policies or procedures should be 

made to the consent process for obtaining NMDP data and research blood 

samples. 

In order to be considered for stem cell donation, donors must be from age 

18 through 60 and in good health. Individuals with serious illness or those 

who are significantly overweight are disqualified. The donor must provide 

a medical history and acknowledge in writing that the history is accurate. 

Pertinent donor medical information is evaluated for acceptance or 

deferral according to NMDP medical eligibility standards and criteria set 

by the medical director at the local donor center. 

NMDP monitors whether registered donors have filled out the appropriate 

medical history questionnaires, but NMDP does not store cumulative data 

on the number of missing medical history questionnaires. During each 

donor center site visit, NMDP staff members check a random number of 

health history questionnaires. However, NMDP is limited in how it 

monitors the donor selection process. Although NMDP tracks the number 

of donors who are unavailable for medical reasons, it cannot determine 

whether an unavailable donor’s medical condition was preexisting, and 

therefore should have been caught in the health screening at the time the 

donor volunteered, or whether the donor’s health changed during the 

period between registration and a request for testing prior to donation. 

NMDP requires that each participating donor center have a system for 

safeguarding donor confidentiality. The Registry identifies donors by code 

number only. Donor centers maintain donor identity and location and limit 

access to this information by using locked file cabinets and locked rooms. 

NMDP also requires that each participating transplant center have a 

system of confidentiality in place to protect the privacy of patients. It 

provides that transplant patient identification should not appear on papers 

or publications, and the patient’s name and location should not be 

disclosed to the donor(s). 

Criteria for Donor 

Selection 

Methods to Protect 

Confidentiality 
Appendix II: How NMDP Achieves Network 

Compliance with Selected Standards and 

Procedures 

Page 36 GAO-03-182 Bone Marrow Transplants 

Organizations responsible for marrow collection and transport must meet 

certain participation criteria in order to be affiliated with NMDP. Among 

other things, participating cord blood banks must be accredited and 

licensed or registered by the Food and Drug Administration for collection 

of autologous blood. Marrow collection centers must provide emergency 

and intensive care services and must be accredited by the Joint 

Commission on Accreditation of Healthcare Organizations. In addition, 

each collection center must have a licensed medical director, an 

experienced marrow collection team that regularly collects bone marrow, 

and a designated site for management of collection activities. 

NMDP has established standards to ensure the proper collection and 

transportation of marrow. These require that bone marrow collection 

centers have experienced personnel to collect marrow and adequate 

resources to support collection and management activities. In addition, 

NMDP requires that collection centers maintain written standard operating 

procedures and policies for collecting, testing, labeling, and transporting 

marrow. 

Laboratories responsible for HLA tissue typing must meet certain criteria 

in order to be affiliated with NMDP. Participating HLA typing laboratories 

must be accredited by the American Society for Histocompatibility and 

Immunogenetics (ASHI)2

 or the European Foundation for Immunogenetics 

for techniques required by NMDP. Laboratories must also comply with all 

state and federal regulations, including the Clinical Laboratory 

Improvements Amendments of 1988 (or their non-U.S. equivalent) for 

infectious disease testing, blood typing, red cell antibody screening, and 

other tests required by NMDP. 

As part of NMDP’s quality control program, participating laboratories must 

type blind samples provided by NMDP. The laboratories must maintain 

monthly error rates less than or equal to 1.5 percent. If a laboratory fails to 

meet quality control and quality assurance standards established by ASHI 

or NMDP, NMDP may require that laboratory to submit a corrective action 

plan. After the period allowed for corrective action, the laboratory’s 

contract with NMDP may be terminated if it still does not meet the 

standards. 

 2

ASHI is an accrediting body that has established standards that all histocompatibility 

laboratories must meet if their services are to be considered acceptable. 

Marrow Collection 

and Transport 

Laboratory Standards 
Appendix II: How NMDP Achieves Network 

Compliance with Selected Standards and 

Procedures 

Page 37 GAO-03-182 Bone Marrow Transplants 

From February 2000 through April 2002, NMDP suspended five 

laboratories responsible for HLA tissue typing. The length of suspension 

ranged from 1 to 9 weeks, and reasons for suspension were related to 

electronic communication problems, overdue samples, and poor 

turnaround time. 

NMDP’s central database is updated when new donors are recruited and 

when information on existing donors changes or donors are deleted from 

the Registry. Information about newly recruited donors includes donor 

identification numbers, demographic data, and the donors’ HLA types. 

According to NMDP procedures, domestic donor centers submit data on 

donors daily through NMDP’s central database. 

Donor File 

Maintenance and 

Updates 
Appendix III: Comments from the Health 

Resources and Services Administration 

Page 38 GAO-03-182 Bone Marrow Transplants 

Appendix III: Comments from the Health 

Resources and Services Administration 
Appendix III: Comments from the Health 

Resources and Services Administration 

Page 39 GAO-03-182 Bone Marrow Transplants 
Appendix III: Comments from the Health 

Resources and Services Administration 

Page 40 GAO-03-182 Bone Marrow Transplants 
Appendix III: Comments from the Health 

Resources and Services Administration 

Page 41 GAO-03-182 Bone Marrow Transplants 
Appendix IV: GAO Contact and Staff 

Acknowledgments 

Page 42 GAO-03-182 Bone Marrow Transplants 

Marcia Crosse, (202) 512-3407 

The following staff members made important contributions to this work: 

Donna Bulvin, Charles Davenport, Donald Keller, Kelly Klemstine, Behn 

Miller, and Roseanne Price. 

Appendix IV: GAO Contact and Staff 

Acknowledgments 

GAO Contact 

Acknowledgments 

(290057) 
The General Accounting Office, the investigative arm of Congress, exists to 

support Congress in meeting its constitutional responsibilities and to help 

improve the performance and accountability of the federal government for the 

American people. GAO examines the use of public funds; evaluates federal 

programs and policies; and provides analyses, recommendations, and other 

assistance to help Congress make informed oversight, policy, and funding 

decisions. GAO’s commitment to good government is reflected in its core values 

of accountability, integrity, and reliability. 

The fastest and easiest way to obtain copies of GAO documents at no cost is 

through the Internet. GAO’s Web site (www.gao.gov) contains abstracts and fulltext files of current reports and testimony and an expanding archive of older 

products. The Web site features a search engine to help you locate documents 

using key words and phrases. You can print these documents in their entirety, 

including charts and other graphics. 

Each day, GAO issues a list of newly released reports, testimony, and 

correspondence. GAO posts this list, known as “Today’s Reports,” on its Web site 

daily. The list contains links to the full-text document files. To have GAO e-mail 

this list to you every afternoon, go to www.gao.gov and select “Subscribe to daily 

E-mail alert for newly released products” under the GAO Reports heading. 

The first copy of each printed report is free. Additional copies are $2 each. A 

check or money order should be made out to the Superintendent of Documents. 

GAO also accepts VISA and Mastercard. Orders for 100 or more copies mailed to a 

single address are discounted 25 percent. Orders should be sent to: 

U.S. General Accounting Office 

441 G Street NW, Room LM 

Washington, D.C. 20548 

To order by Phone: Voice: (202) 512-6000 

TDD: (202) 512-2537 

Fax: (202) 512-6061 

Contact: 

Web site: www.gao.gov/fraudnet/fraudnet.htm 

E-mail: fraudnet@gao.gov

Automated answering system: (800) 424-5454 or (202) 512-7470 

Jeff Nelligan, managing director, NelliganJ@gao.gov (202) 512-4800 

U.S. General Accounting Office, 441 G Street NW, Room 7149 

Washington, D.C. 20548 

GAO’s Mission 

Obtaining Copies of 

GAO Reports and 

Testimony 

Order by Mail or Phone 

To Report Fraud, 

Waste, and Abuse in 

Federal Programs 

Public Affairs