12 2 STA T .709PUBLIC LA W 110 – 20 4— AP R .24 , 200 8‘ ‘ SEC.1 11 2 .C L E ARINGHOU SEO F NE WB ORN SCREENING INFOR M A T ION. ‘ ‘ (a)INGE NE RAL.—TheS e cr e t ar y, act ing thr ou gh the Adm ini s- trator o f the H ea l th R esources and Ser v ices Administration (referred to in this p art as the ‘Administrator ’ ), in consultation w ith the D irector of the C enters for Disease Control and P revention and the Director of the N ational Institutes of Health, shall esta b lish and maintain a central clearinghouse of current educational and family support and services information, materials, resources, research, and data on newborn screening to— ‘‘( 1 ) enable parents and family members of newborns, health professionals, industry representatives, and other mem- bers of the public to increase their awareness, k nowledge, and understanding of newborn screening
‘‘( 2 ) increase awareness, knowledge, and understanding of newborn diseases and screening services for e x pectant individ- uals and families; and ‘‘( 3 ) maintain current data on q uality indicators to measure performance of newborn screening, such as false-positive rates and other quality indicators as determined by the Advisory Committee under section 1111. ‘‘(b) IN T ERNET A V A I LA B ILIT Y .—The Secretary, acting through the Administrator, shall ensure that the clearinghouse described under subsection (a)— ‘‘(1) is available on the Internet; ‘‘(2) includes an interactive forum; ‘‘(3) is updated on a regular basis, but not less than quar- terly; and ‘‘( 4 ) provides— ‘‘(A) links to Government-sponsored, non-profit, and other Internet websites of laboratories that have dem- onstrated expertise in newborn screening that supply research-based information on newborn screening tests cur- rently available throughout the U nited States; ‘‘( B ) information about newborn conditions and screening services available in each State from laboratories certified under subpart 2 of part F of title III, including information about supplemental screening that is available but not required, in the State where the infant is born; ‘‘(C) current research on both treatable and not-yet treatable conditions for which newborn screening tests are available; ‘‘(D) the availability of Federal funding for newborn and child screening for heritable disorders including grants authori z ed under the Newborn Screening Saves L ives Act of2 0 0 7
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‘‘( E ) other relevant information as determined appro- priate by the Secretary. ‘‘(c) N O N DUP LI C ATION.—In developing the clearinghouse under this section, the Secretary shall ensure that such clearinghouse minimizes duplication and supplements, not supplants, existing information sharing efforts. ‘‘(d) AUT H ORI Z ATION O F APPROPRIATION S .—There are authorized to be appropriated to carry out this section, $ 2, 5 00,000 for fiscal year 200 8 , $2,531,250 for fiscal year 200 9 , $2,5 6 2,500 for fiscal year 2010, $2,593,750 for fiscal year 2011, and $2,625,000 for fiscal year 2012.’’. Establi s hmen t .42USC30 0b –1 1.
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