110TH CONGRESS 
2D SESSION 
H. R. 1553 
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 regard-
ing 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 Representa-
tives 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 be-
tween 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 teen-
agers 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 re-
search 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 lym-
phatic system, and tumors of the muscles, kidneys, 
and nervous system. Each of these behaves dif-
ferently, but all are characterized by an uncontrolled 
proliferation of abnormal cells. 
(9) Eighty percent of the children who are diag-
nosed 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 appropria-
tions to— 
(1) encourage the support for pediatric cancer 
research and other activities related to pediatric can-
cer; 
(2) establish a comprehensive national child-
hood 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 AWARE-
NESS.—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 AWARE-
NESS. 
‘‘(a) PEDIATRIC CANCER RESEARCH.— 
‘‘(1) PROGRAMS OF RESEARCH EXCELLENCE IN 
PEDIATRIC
CANCER.—The Secretary, in collabora-
tion 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 ac-
tivities related to pediatric cancer, including thera-
peutically applicable research to generate effective 
treatments, pediatric preclinical testing, and pedi-
atric clinical trials through National Cancer Insti-
tute-supported pediatric cancer clinical trial groups 
and their member institutions. In enhancing, ex-
panding, 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 pedi-
atric 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 wide-
spread implementation of— 
‘‘(A) activities that provide available infor-
mation on treatment protocols to ensure early 
access to the best available therapies and clin-
ical trials for pediatric cancers; 
‘‘(B) activities that provide available infor-
mation 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 edu-
cational 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 Sec-
retary 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 dis-
parity, and medically underserved communities. 
‘‘(2) PERFORMANCE
MEASUREMENT, TRANS-
PARENCY, 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 appro-
priate as needed by patients and families af-
fected by childhood cancer; and 
‘‘(B) approved by the Secretary. 
‘‘(c) RULE OF CONSTRUCTION.—Nothing in this sec-
tion shall be construed as being inconsistent with the goals 
and purposes of the Minority Health and Health Dispari-
ties 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 author-
ization of appropriations is in addition to the authoriza-
tion of appropriations established in section 402A with re-
spect to such purpose. Funds appropriated under this sub-
section 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 fol-
lowing: 
‘‘SEC. 399E–1. NATIONAL CHILDHOOD CANCER REGISTRY. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention, shall award a grant to enhance and expand infra-
structure to track the epidemiology of pediatric cancer into 
a comprehensive nationwide registry of actual occurrences 
of pediatric cancer. Such registry shall be updated to in-
clude an actual occurrence within weeks of the date of 
such occurrence.
‘‘(b) INFORMED CONSENT AND PRIVACY REQUIRE-
MENTS
AND
COORDINATION
WITH
EXISTING
PRO-
GRAMS.—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 Account-
ability 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’’. 
Passed the House of Representatives June 12, 2008. 
Attest: 
Clerk.
110TH CONGRESS 
2D SESSION 
H. R. 1553 
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.