HR 1553 RDS 
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-
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HR 1553 RDS 
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. 
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‘‘(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: 
LORRAINE C. MILLER, 
Clerk. 
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