42 U.S.C. § 300b: Clearinghouse of newborn screening information

enable parents and family members of newborns, health professionals, industry representatives, and other members of the public to increase their awareness, knowledge, and understanding of newborn screening; increase awareness, knowledge, and understanding of newborn diseases and screening services for expectant individuals and families; maintain current information on quality indicators to measure performance of newborn screening, such as false-positive rates and other quality indicators as determined by the Advisory Committee under section 300b–10 of this title ; maintain current information on the number of conditions for which screening is conducted in each State; and disseminate available evidence-based guidelines related to diagnosis, counseling, and treatment with respect to conditions detected by newborn screening. is available on the Internet; includes an interactive forum; is updated on a regular basis, but not less than quarterly; and links to Government-sponsored, non-profit, and other Internet websites of laboratories that have demonstrated expertise in newborn screening that supply research-based information on newborn screening tests currently available throughout the United States; information about newborn conditions and screening services available in each State from laboratories certified under subpart 2 of part F of subchapter II, including information about supplemental screening that is available but not required, in the State where the infant is born; current research on both treatable and not-yet treatable conditions for which newborn screening tests are available; the availability of Federal funding for newborn and child screening for heritable disorders including grants authorized under the Newborn Screening Saves Lives Reauthorization Act of 2014; and other relevant information as determined appropriate by the Secretary. In carrying out activities under this section, the Secretary shall ensure that such activities minimize duplication and supplement, not supplant, existing information sharing efforts.