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 activi-
ties 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 avail-
able 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 out-
reach for parents, peer-to-peer and parent-to-parent sup-
port networks, information on school re-entry and postsec-
ondary education, and resource directories or referral serv-
ices 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.
H. R. 1553—3 
‘‘(2) PERFORMANCE
MEASUREMENT, TRANSPARENCY, AND 
ACCOUNTABILITY.—For each grant awarded under this sub-
section, 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 Edu-
cation Act of 2000 (42 U.S.C. 202 note). 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—For purposes of car-
rying 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 epidemi-
ology 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 estab-
lished 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 regula-
tions, 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.