12 2 STA T . 2 630PUBLIC LA W 110 – 2 85—J UL Y 2 9, 2008 ‘ ‘ (2)PERFO R MANC E MEA SU REMEN T, TRANS P ARENC Y ,AN D ACCOUNTA BIL ITY .—Foreachg ra nt a w ar d ed u nder th is su b- section, the S ecretar y sha l lde v elo p and i m plement metrics- based per f ormance measures to assess the effectiveness of activities funded under such grant. ‘‘( 3 ) I NFORMATIONAL RE Q UIREMENTS.— A ny 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) R ULE OF C ONSTRUCTION.— N othing in this section shall be construed as being inconsistent with the goals and purposes of the M inority H ealth and Health D isparities Research and E du- cation Act of 2 0 00( 4 2 U .S.C. 202 note). ‘‘(d) AUT H ORI Z ATION OF APPROPRIATIONS.—For purposes of car- rying out this section and section 3 9 9E – 1, there are authori z ed 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 e x pended. ’ ’. (b) NATIONAL CHILDHOOD CANCER RE G ISTRY.—Part M of title III of the Public Health Service Act (42 U.S.C. 2 8 0eetse q .) is amended— (1) by inserting after section 399E the following
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‘ SEC.39 9E –1 . NATIO NA L C H IL D HOOD CANCE R RE G ISTR Y . ‘‘(a) IN G ENERAL.— T he Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall award a grant to enhance and expand infrastructure to trac k 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 PRI V ACY REQUIREMENTS AND COORDINATION W ITH E X ISTING PROGRAMS.—The registry estab- lished pursuant to subsection (a) shall be sub j ect to section 5 52a of title 5, United States Code, the regulations promulgated under section 2 6 4(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 Grants.42USC 2 80e–3 a.
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