H. R. 1553 

One Hundred Tenth Congress 

of the 

United States of America 

AT THE SECOND SESSION 

Begun and held at the City of Washington on Thursday, 

the third day of January, two thousand and eight 

An Act 

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. 

Be it enacted by the Senate and House of Representatives of 

the United States of America in Congress assembled, 

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— 
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(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— 

‘‘(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. 
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‘‘(2) PERFORMANCE MEASUREMENT, TRANSPARENCY, AND

ACCOUNTABILITY.—For each grant awarded under this subsection, the Secretary shall develop and implement metricsbased 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 
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(2) in section 399F(a), by inserting ‘‘(other than section 

399E–1)’’ after ‘‘this part’’. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate.