69–006 

110TH CONGRESS REPORT " ! HOUSE OF REPRESENTATIVES 2d Session 110–706 

CAROLINE PRYCE WALKER CONQUER CHILDHOOD 

CANCER ACT OF 2008 

JUNE 10, 2008.—Committed to the Committee of the Whole House on the State of 

the Union and ordered to be printed 

Mr. DINGELL, from the Committee on Energy and Commerce, 

submitted the following 

R E P O R T 

[To accompany H.R. 1553] 

[Including cost estimate of the Congressional Budget Office] 

The Committee on Energy and Commerce, to whom was referred 

the bill (H.R. 1553) to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments 

and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers, having considered the same, report favorably thereon with amendments and recommend that the 

bill as amended do pass. 

CONTENTS 

Page 

Amendments ............................................................................................................ 2 

Purpose and Summary ............................................................................................ 3 

Background and Need for Legislation .................................................................... 4 

Hearings ................................................................................................................... 4 

Committee Consideration ........................................................................................ 4 

Committee Votes ...................................................................................................... 4 

Committee Oversight Findings ............................................................................... 4 

Statement of General Performance Goals and Objectives .................................... 5 

New Budget Authority, Entitlement Authority, and Tax Expenditures ............. 5 

Earmarks and Tax and Tariff Benefits .................................................................. 5 

Committee Cost Estimate ....................................................................................... 5 

Congressional Budget Office Estimate ................................................................... 5 

Federal Mandates Statement ................................................................................. 7 

Advisory Committee Statement .............................................................................. 7 

Constitutional Authority Statement ...................................................................... 7 

Applicability to Legislative Branch ........................................................................ 7 

Section-by-Section Analysis of the Legislation ...................................................... 7 


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Changes in Existing Law Made by the Bill, as Reported ..................................... 9 

AMENDMENTS

The amendments are as follows: 

Strike all after the enacting clause and insert the following: 

SECTION 1. SHORT TITLE. 

This Act may be cited as the ‘‘Caroline Pryce Walker Conquer Childhood Cancer 

Act of 2008’’. 

SEC. 2. FINDINGS. 

Congress makes the following findings: 

(1) Cancer kills more children than any other disease. 

(2) Each year cancer kills more children between 1 and 20 years of age than 

asthma, diabetes, cystic fibrosis, and AIDS, combined. 

(3) Every year, over 12,500 young people are diagnosed with cancer. 

(4) Each year about 2,300 children and teenagers die from cancer. 

(5) One in every 330 Americans develops cancer before age 20. 

(6) Some forms of childhood cancer have proven to be so resistant that even 

in spite of the great research strides made, most of those children die. Up to 

75 percent of the children with cancer can now be cured. 

(7) The causes of most childhood cancers are not yet known. 

(8) Childhood cancers are mostly those of the white blood cells (leukemias), 

brain, bone, the lymphatic system, and tumors of the muscles, kidneys, and 

nervous system. Each of these behaves differently, but all are characterized by 

an uncontrolled proliferation of abnormal cells. 

(9) Eighty percent of the children who are diagnosed with cancer have disease 

which has already spread to distant sites in the body. 

(10) Ninety percent of children with a form of pediatric cancer are treated at 

one of the more than 200 Children’s Oncology Group member institutions 

throughout the United States. 

SEC. 3. PURPOSES. 

It is the purpose of this Act to authorize appropriations to—

(1) encourage the support for pediatric cancer research and other activities related to pediatric cancer; 

(2) establish a comprehensive national childhood cancer registry; and 

(3) provide informational services to patients and families affected by childhood cancer. 

SEC. 4. PEDIATRIC CANCER RESEARCH AND AWARENESS; NATIONAL CHILDHOOD CANCER 

REGISTRY. 

(a) PEDIATRIC CANCER RESEARCH AND AWARENESS.—Subpart 1 of part C of title 

IV of the Public Health Service Act (42 U.S.C. 285 et seq.) is amended by adding 

at the end the following: 

‘‘SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARENESS. 

‘‘(a) PEDIATRIC CANCER RESEARCH.—

‘‘(1) PROGRAMS OF RESEARCH EXCELLENCE IN PEDIATRIC CANCER.—The Secretary, in collaboration with the Director of NIH and other Federal agencies 

with interest in prevention and treatment of pediatric cancer, shall continue to 

enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric preclinical testing, and pediatric clinical 

trials through National Cancer Institute-supported pediatric cancer clinical trial 

groups and their member institutions. In enhancing, expanding, and intensifying such research and other activities, the Secretary is encouraged to take 

into consideration the application of such research and other activities for minority, health disparity, and medically underserved communities. For purposes 

of this section, the term ‘pediatric cancer research’ means research on the 

causes, prevention, diagnosis, recognition, treatment, and long-term effects of 

pediatric cancer. 

‘‘(2) PEER REVIEW REQUIREMENTS.—All grants awarded under this subsection 

shall be awarded in accordance with section 492. 

‘‘(b) PUBLIC AWARENESS OF PEDIATRIC CANCERS AND AVAILABLE TREATMENTS AND

RESEARCH.—

‘‘(1) IN GENERAL.—The Secretary may award grants to childhood cancer professional and direct service organizations for the expansion and widespread implementation of—


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‘‘(A) activities that provide available information on treatment protocols 

to ensure early access to the best available therapies and clinical trials for 

pediatric cancers; 

‘‘(B) activities that provide available information on the late effects of pediatric cancer treatment to ensure access to necessary long-term medical 

and psychological care; and 

‘‘(C) direct resource services such as educational outreach for parents, 

peer-to-peer and parent-to-parent support networks, information on school 

re-entry and postsecondary education, and resource directories or referral 

services for financial assistance, psychological counseling, and other support 

services. 

In awarding grants under this paragraph, the Secretary is encouraged to take 

into consideration the extent to which an entity would use such grant for purposes of making activities and services described in this paragraph available to 

minority, health disparity, and medically underserved communities. 

‘‘(2) PERFORMANCE MEASUREMENT, TRANSPARENCY, AND ACCOUNTABILITY.—For 

each grant awarded under this subsection, the Secretary shall develop and implement metrics-based performance measures to assess the effectiveness of activities funded under such grant. 

‘‘(3) INFORMATIONAL REQUIREMENTS.—Any information made available pursuant to a grant awarded under paragraph (1) shall be—

‘‘(A) culturally and linguistically appropriate as needed by patients and 

families affected by childhood cancer; and 

‘‘(B) approved by the Secretary. 

‘‘(c) RULE OF CONSTRUCTION.—Nothing in this section shall be construed as being 

inconsistent with the goals and purposes of the Minority Health and Health Disparities Research and Education Act of 2000 (42 U.S.C. 202 note). 

‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For purposes of carrying out this section and section 399E–1, there are authorized to be appropriated $30,000,000 for 

each of fiscal years 2009 through 2013. Such authorization of appropriations is in 

addition to the authorization of appropriations established in section 402A with respect to such purpose. Funds appropriated under this subsection shall remain available until expended.’’. 

(b) NATIONAL CHILDHOOD CANCER REGISTRY.—Part M of title III of the Public 

Health Service Act (42 U.S.C. 280e et seq.) is amended—

(1) by inserting after section 399E the following: 

‘‘SEC. 399E–1. NATIONAL CHILDHOOD CANCER REGISTRY. 

‘‘(a) IN GENERAL.—The Secretary, acting through the Director of the Centers for 

Disease Control and Prevention, shall award a grant to enhance and expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences of pediatric cancer. Such registry shall be updated to include an actual occurrence within weeks of the date of such occurrence. 

‘‘(b) INFORMED CONSENT AND PRIVACY REQUIREMENTS AND COORDINATION WITH

EXISTING PROGRAMS.—The registry established pursuant to subsection (a) shall be 

subject to section 552a of title 5, United States Code, the regulations promulgated 

under section 264(c) of the Health Insurance Portability and Accountability Act of 

1996, applicable Federal and State informed consent regulations, any other applicable Federal and State laws relating to the privacy of patient information, and section 399B(d)(4) of this Act.’’; and 

(2) in section 399F(a), by inserting ‘‘(other than section 399E–1)’’ after ‘‘this 

part’’. 

Amend the title so as to read: 

A bill to amend the Public Health Service Act to advance medical research and 

treatments into pediatric cancers, ensure patients and families have access to information regarding pediatric cancers and current treatments for such cancers, establish a national childhood cancer registry, and promote public awareness of pediatric 

cancer. 

PURPOSE AND SUMMARY

The purpose of H.R. 1553, the ‘‘Caroline Pryce Walker Conquer 

Childhood Cancer Act of 2008’’, is to amend the Public Health Service Act to advance medical research and treatments into pediatric 

cancers, ensure patients and families have access to information regarding pediatric cancers and current treatments for such cancers, 


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establish a national childhood cancer registry, and promote public 

awareness of pediatric cancers. 

BACKGROUND AND NEED FOR LEGISLATION

Between infancy and 15 years of age, cancer is the leading cause 

of death by disease among U.S. children. In 2007, approximately 

10,400 new cases of pediatric cancer were diagnosed in children 

ages 0 to 14 years. Although the incidence of invasive cancer in 

children has increased slightly over the past 30 years, mortality 

has declined dramatically for many childhood cancers. The combined 5-year survival rate for all childhood cancers has improved 

from less than 50 percent before the 1970s to nearly 80 percent 

today, and the 10-year survival rate is greater than 75 percent. 

Despite these advances, treatments for some childhood cancers, 

including brain tumors and neuroblastoma, are inadequate. Twothirds of children who are successfully treated experience serious 

and long-term effects from treatment. Negative effects resulting 

from current pediatric cancer therapies indicate a need to strengthen Federal support for activities leading to an enhanced understanding of childhood cancers and treatments that are less toxic 

and more effective. 

H.R. 1553 would strengthen Federal investment in pediatric cancer research by advancing medical research and treatments into pediatric cancers, ensuring patients and families have access to current treatments and information regarding pediatric cancers, and 

promoting public awareness of pediatric cancers. 

HEARINGS

No hearings were held in connection with H.R. 1553. 

COMMITTEE CONSIDERATION

On Wednesday, April 23, 2008, the Subcommittee on Health met 

in open markup session and favorably forwarded H.R. 1553, 

amended, to the full Committee for consideration by a voice vote. 

On Wednesday, May 7, 2008, the full Committee met in open 

markup session and ordered H.R. 1553 favorably reported to the 

House, amended, by a voice vote. 

COMMITTEE VOTES

Clause 3(b) of rule XIII of the Rules of the House of Representatives requires the Committee to list the record votes on the motion 

to report legislation and amendments thereto. No record votes were 

taken on amendments or in connection with ordering H.R. 1553 reported to the House. A motion by Mr. Dingell to order H.R. 1553 

favorably reported to the House, amended, was agreed to by a voice 

vote. 

COMMITTEE OVERSIGHT FINDINGS

Regarding clause 3(c)(1) of rule XIII of the Rules of the House 

of Representatives, the oversight findings of the Committee regarding H.R. 1553 are reflected in this report. 


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STATEMENT OF GENERAL PERFORMANCE GOALS AND OBJECTIVES

The objective of H.R. 1553 is to amend the Public Health Service 

Act to encourage the Secretary of the Department of Health and 

Human Services (HHS), in collaboration with the Director of the 

National Institutes of Health (NIH) and other Federal agencies to 

continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer. In doing so, 

the Secretary of HHS is encouraged to take into consideration the 

application of such research and other activities for minority, 

health disparity, and medically underserved communities. 

NEW BUDGET AUTHORITY, ENTITLEMENT AUTHORITY, AND TAX

EXPENDITURES

Regarding compliance with clause 3(c)(2) of rule XIII of the Rules 

of the House of Representatives, the Committee finds that H.R. 

1553 would result in no new or increased budget authority, entitlement authority, or tax expenditures or revenues. 

EARMARKS AND TAX AND TARIFF BENEFITS

Regarding compliance with clause 9 of rule XXI of the Rules of 

the House of Representatives, H.R. 1553 does not contain any congressional earmarks, limited tax benefits, or limited tariff benefits 

as defined in clause 9(d), 9(e), or 9(f) of rule XXI. 

COMMITTEE COST ESTIMATE

The Committee adopts as its own the cost estimate on H.R. 1553 

prepared by the Director of the Congressional Budget Office pursuant to section 402 of the Congressional Budget Act of 1974. 

CONGRESSIONAL BUDGET OFFICE ESTIMATE

Pursuant to clause 3(c)(3) of rule XIII of the Rules of the House 

of Representatives, the following is the cost estimate on H.R. 1553 

provided by the Congressional Budget Office pursuant to section 

402 of the Congressional Budget Act of 1974: 

U.S. CONGRESS, 

CONGRESSIONAL BUDGET OFFICE, Washington, DC, May 20, 2008. 

Hon. JOHN D. DINGELL, 

Chairman, Committee on Energy and Commerce, 

House of Representatives, Washington, DC. 

DEAR MR. CHAIRMAN: The Congressional Budget Office has prepared the enclosed cost estimate for H.R. 1553, the Caroline Pryce 

Walker Conquer Childhood Cancer Act of 2008. 

If you wish further details on this estimate, we will be pleased 

to provide them. The CBO staff contact is Sarah Evans. 

Sincerely, 

PETER R. ORSZAG. 

Enclosure. 


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H.R. 1553—Caroline Pryce Walker Conquer Childhood Cancer Act 

of 2008 

Summary: H.R. 1553 would amend the Public Health Service 

(PHS) Act to instruct the Director of the National Institutes of 

Health (NIH) to enhance, expand, and intensify research to generate effective treatments for pediatric cancer. The bill would authorize the Secretary of Health and Human Services (HHS) to 

award grants to professional and direct-service organizations to increase public awareness of treatments and support networks available for pediatric cancer patients and their families. H.R. 1553 also 

would require the Director of the Centers for Disease Control and 

Prevention (CDC) to create a registry to enhance epidemiological 

research on pediatric cancer. 

H.R. 1553 would authorize the appropriation of $30 million a 

year for fiscal years 2009 through 2013. CBO estimates that implementing the bill would cost $119 million over the 2009–2013 period, assuming the appropriation of the specified amounts. Enacting H.R. 1553 would have no effect on direct spending or revenues. 

The bill contains no private-sector or intergovernmental mandates as defined in the Unfunded Mandates Reform Act (UMRA) 

and would impose no costs on state, local, or tribal governments. 

Estimated cost to the Federal Government: The estimated budgetary impact of H.R. 1553 is shown in the following table. The costs 

of this legislation fall within budget function 550 (health). 

By fiscal year, in millions of dollars— 

2009 2010 2011 2012 2013 2009– 

2013 

CHANGES IN SPENDING SUBJECT TO APPROPRIATION 

Authorization Level ........................................................... 30 30 30 30 30 150 

Estimated Outlays ............................................................ 9 24 28 29 29 119 

Basis of estimate: H.R. 1553 would authorize the appropriation 

of $30 million for each of fiscal years 2009 through 2013. For this 

estimate, CBO assumes that H.R. 1553 will be enacted near the 

start of fiscal year 2009 and that the authorized amounts will be 

appropriated for each year. Using historical patterns of spending 

for similar programs, CBO estimates that implementing H.R. 1553 

would cost $119 million over the 2009–2013 period. 

H.R. 1553 would instruct the Secretary of HHS, acting through 

the Director of NIH, to collaborate with other federal agencies to 

enhance, expand, and intensify their research to generate effective 

treatments for pediatric cancers. The Secretary would be authorized to award grants to professional and direct-service organizations to expand activities that increase awareness of treatments, 

long-term effects of pediatric cancer, and support networks for patients and parents. H.R. 1553 also would direct the Secretary of 

HHS, acting through the Director of the CDC, to award a grant to 

create a national registry of cases of pediatric cancer that could be 

used for epidemiological studies. 

The National Cancer Institute (NCI), which supports the majority of pediatric cancer activities at the NIH, spent $173 million on 

childhood cancer activities in fiscal year 2007. Over the past few 

years, childhood cancer activities at NCI have included: research on 

the causes, diagnosis, treatment, and prevention of childhood canVerDate Aug 31 2005 09:43 Jun 12, 2008 Jkt 069006 PO 00000 Frm 00006 Fmt 6659 Sfmt 6602 E:\HR\OC\HR706.XXX HR706

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cers; a national campaign to increase understanding of childhood 

cancer; and a study of the feasibility of establishing a Childhood 

Cancer Research Network to develop a national registry of childhood cancers. 

Intergovernmental and private-sector impact: H.R. 1553 contains 

no private-sector intergovernmental mandates as defined in UMRA 

and would impose no costs on state, local, or tribal governments. 

Previous estimate: On December 19, 2007, CBO transmitted an 

estimate for S. 911, the Conquer Childhood Cancer Act of 2007, as 

reported by the Senate Committee on Health, Education, Labor, 

and Pensions on December 12, 2007. H.R. 1553 is very similar to 

S. 911. The major difference between the bills is that H.R. 1553 

would require an increased focus on health disparity issues that 

was not explicitly required in S. 911. CBO does not estimate any 

impact on costs from this change. The slight change in CBO’s estimate for H.R. 1553 reflects updated historical information on 

spending for cancer research and outreach activities at NIH. 

Estimate prepared by: Federal costs: Sarah Evans and Tim 

Gronniger; Impact on state, local and tribal governments: Lisa Ramirez-Branum; Impact on the private sector: Patrick Bernhardt. 

Estimate approved by: Keith J. Fontenot, Deputy Assistant Director for Health and Human Resources, Budget Analysis Division. 

FEDERAL MANDATES STATEMENT

The Committee adopts as its own the estimate of Federal mandates regarding H.R. 1553 prepared by the Director of the Congressional Budget Office pursuant to section 423 of the Unfunded Mandates Reform Act. 

ADVISORY COMMITTEE STATEMENT

No advisory committees within the meaning of section 5(b) of the 

Federal Advisory Committee Act would be created by H.R. 1553. 

CONSTITUTIONAL AUTHORITY STATEMENT

Pursuant to clause 3(d)(1) of rule XIII of the Rules of the House 

of Representatives, the Committee finds that the Constitutional authority for H.R. 1553 is provided in the provisions of Article I, section 8, clause 1, that relate to expending funds to provide for the 

general welfare of the United States. 

APPLICABILITY TO LEGISLATIVE BRANCH

The Committee finds that H.R. 1553 does not relate to the terms 

and conditions of employment or access to public services or accommodations within the meaning of section 102(b)(3) of the Congressional Accountability Act of 1995. 

SECTION-BY-SECTION ANALYSIS OF THE LEGISLATION

Section 1. Short title 

Section 1 establishes the short title of the Act as the ‘‘Caroline 

Pryce Walker Conquer Childhood Cancer Act of 2008’’. 

Section 2. Findings 

Section 2 lists the findings. 


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Section 3. Purposes 

Section 3 states that the purposes of the legislation include: (1) 

Encouraging support for pediatric cancer research and other activities related to pediatric cancer; (2) establishing a comprehensive 

national childhood cancer registry; and (3) providing informational 

services to patients and families affected by childhood cancer. 

Section 4. Pediatric cancer research and awareness; national childhood cancer registry 

Section 4 amends Subpart 1 of part C of title IV of the Public 

Health Service Act (42 U.S.C. 285 et seq.) by inserting a new section 417E, which states that the Secretary of HHS, in collaboration 

with the Director of the NIH and other Federal agencies with interest in prevention and treatment of pediatric cancer, shall continue 

to enhance, expand, and intensify pediatric cancer research and 

other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric 

preclinical testing, and pediatric clinical trials through National 

Cancer Institute-supported pediatric cancer clinical trial groups 

and their member institutions. In enhancing, expanding, and intensifying such research and other activities, the Secretary of HHS is 

encouraged to take into consideration the application of such research and other activities for minority, health disparity, and medically underserved communities. All grants awarded under this section shall be awarded in accordance with section 492. 

Section 4 also states that the Secretary of HHS may award 

grants to childhood cancer professional and direct service organizations for the expansion and widespread implementation of: (1) Activities that provide available information on treatment protocols to 

ensure early access to the best available therapies and clinical 

trials for pediatric cancers; (2) activities that provide available information on the late effects of pediatric cancer treatment to ensure 

access to necessary long-term medical and psychological care; and 

(3) direct resource services, such as educational outreach for parents, peer-to-peer and parent-to-parent support networks, information on school re-entry and postsecondary education, and resource 

directories or referral services for financial assistance, psychological counseling, and other support services. In awarding these 

grants, the Secretary of HHS is encouraged to take into consideration the extent to which an entity would use such grant for purposes of making activities and services available to minority, health 

disparity, and medically underserved communities. For each grant 

awarded under this subsection, the Secretary of HHS shall develop 

and implement metrics-based performance measures to assess the 

effectiveness of activities funded under such grant. 

Section 4 states that any information made available pursuant to 

a grant awarded in this section shall be approved by the Secretary 

of HHS and must be culturally and linguistically appropriate as 

needed by patients and families affected by childhood cancer. 

Section 4 states that nothing in this section shall be construed 

as being inconsistent with the goals and purposes of the Minority 

Health and Health Disparities Research and Education Act of 2000 

(42 U.S.C. 202 note). 

For purposes of carrying out section 4 and section 399E–1, there 

are authorized to be appropriated $30,000,000 for each of fiscal 


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years 2009 through 2013. Such authorization of appropriations is 

in addition to the authorization of appropriations established under 

section 402A with respect to such purposes. Funds appropriated 

under this subsection shall remain available until expended. 

Section 4 amends Part M of title III of the Public Health Service 

Act (42 U.S.C. 280e et seq.) by inserting a new section 399E–1, 

which states that the Secretary of HHS, acting through the Director of the CDC, shall award a grant to enhance and expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences of pediatric 

cancer. Such registry shall be updated to include an actual occurrence within weeks of the date of such occurrence. This registry 

shall be subject to section 552a of title 5, United States Code, the 

regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996, applicable Federal 

and State informed consent regulations, any other applicable Federal and State laws relating to the privacy of patient information, 

and section 399B(d)(4) of this Act. 

CHANGES IN EXISTING LAW MADE BY THE BILL, AS REPORTED

In compliance with clause 3(e) of rule XIII of the Rules of the 

House of Representatives, changes in existing law made by the bill, 

as reported, are shown as follows (new matter is printed in italic 

and existing law in which no change is proposed is shown in 

roman): 

PUBLIC HEALTH SERVICE ACT 

* * * * * * * 

TITLE III—GENERAL POWERS AND DUTIES OF PUBLIC 

HEALTH SERVICE 

* * * * * * * 

PART M—NATIONAL PROGRAM OF CANCER REGISTRIES

* * * * * * * 

SEC. 399E–1. NATIONAL CHILDHOOD CANCER REGISTRY. 

(a) IN GENERAL.—The Secretary, acting through the Director of 

the Centers for Disease Control and Prevention, shall award a grant 

to enhance and expand infrastructure to track the epidemiology of 

pediatric cancer into a comprehensive nationwide registry of actual 

occurrences of pediatric cancer. Such registry shall be updated to include an actual occurrence within weeks of the date of such occurrence. 

(b) INFORMED CONSENT AND PRIVACY REQUIREMENTS AND COORDINATION WITH EXISTING PROGRAMS.—The registry established 

pursuant to subsection (a) shall be subject to section 552a of title 

5, United States Code, the regulations promulgated under section 

264(c) of the Health Insurance Portability and Accountability Act of 

1996, applicable Federal and State informed consent regulations, 

any other applicable Federal and State laws relating to the privacy 

of patient information, and section 399B(d)(4) of this Act. 


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SEC. 399F. AUTHORIZATION OF APPROPRIATIONS. 

(a) REGISTRIES.—For the purpose of carrying out this part (other 

than section 399E–1), there are authorized to be appropriated $30,000,000 for fiscal year 1994, and such sums as may be necessary for each of the fiscal years 1995 through 2003. Of the 

amounts appropriated under the preceding sentence for any such 

fiscal year, the Secretary may obligate not more than 25 percent 

for carrying out section 399C, and not more than 10 percent may 

be expended for assessing the accuracy, completeness and quality 

of data collected, and not more than 10 percent of which is to be 

expended under section 399D. 

* * * * * * * 

TITLE IV—NATIONAL RESEARCH INSTITUTES 

* * * * * * * 

PART C—SPECIFIC PROVISIONS RESPECTING NATIONAL RESEARCH

INSTITUTES

Subpart 1—National Cancer Institute 

* * * * * * * 

SEC. 417E. PEDIATRIC CANCER RESEARCH AND AWARENESS. 

(a) PEDIATRIC CANCER RESEARCH.— (1) PROGRAMS OF RESEARCH EXCELLENCE IN PEDIATRIC CAN- CER.—The Secretary, in collaboration with the Director of NIH 

and other Federal agencies with interest in prevention and 

treatment of pediatric cancer, shall continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric preclinical testing, and pediatric clinical trials through National 

Cancer Institute-supported pediatric cancer clinical trial groups 

and their member institutions. In enhancing, expanding, and 

intensifying such research and other activities, the Secretary is 

encouraged to take into consideration the application of such research and other activities for minority, health disparity, and 

medically underserved communities. For purposes of this section, the term ‘‘pediatric cancer research’’ means research on the 

causes, prevention, diagnosis, recognition, treatment, and longterm effects of pediatric cancer. 

(2) PEER REVIEW REQUIREMENTS.—All grants awarded under 

this subsection shall be awarded in accordance with section 

492. 

(b) PUBLIC AWARENESS OF PEDIATRIC CANCERS AND AVAILABLE

TREATMENTS AND RESEARCH.—

(1) IN GENERAL.—The Secretary may award grants to childhood cancer professional and direct service organizations for 

the expansion and widespread implementation of—

(A) activities that provide available information on treatment protocols to ensure early access to the best available 

therapies and clinical trials for pediatric cancers; 

(B) activities that provide available information on the 

late effects of pediatric cancer treatment to ensure access to 

necessary long-term medical and psychological care; and 


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(C) direct resource services such as educational outreach 

for parents, peer-to-peer and parent-to-parent support networks, information on school re-entry and postsecondary 

education, and resource directories or referral services for 

financial assistance, psychological counseling, and other 

support services. 

In awarding grants under this paragraph, the Secretary is encouraged to take into consideration the extent to which an entity 

would use such grant for purposes of making activities and 

services described in this paragraph available to minority, 

health disparity, and medically underserved communities. 

(2) PERFORMANCE MEASUREMENT, TRANSPARENCY, AND ACCOUNTABILITY.—For each grant awarded under this subsection, 

the Secretary shall develop and implement metrics-based performance measures to assess the effectiveness of activities funded under such grant. 

(3) INFORMATIONAL REQUIREMENTS.—Any information made 

available pursuant to a grant awarded under paragraph (1) 

shall be—

(A) culturally and linguistically appropriate as needed by 

patients and families affected by childhood cancer; and 

(B) approved by the Secretary. 

(c) RULE OF CONSTRUCTION.—Nothing in this section shall be 

construed as being inconsistent with the goals and purposes of the 

Minority Health and Health Disparities Research and Education 

Act of 2000 (42 U.S.C. 202 note). 

(d) AUTHORIZATION OF APPROPRIATIONS.—For purposes of carrying out this section and section 399E–1, there are authorized to 

be appropriated $30,000,000 for each of fiscal years 2009 through 

2013. Such authorization of appropriations is in addition to the authorization of appropriations established in section 402A with respect to such purpose. Funds appropriated under this subsection 

shall remain available until expended. 

* * * * * * * 

Æ 


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