§ 300b–11 — Clearinghouse Of Newborn Screening Information

(a) The Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this part as the “Administrator”), in consultation with the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall establish 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 members of the public to increase their awareness, knowledge, and understanding of newborn screening; (2) increase awareness, knowledge, and understanding of newborn diseases and screening services for expectant individuals and families; (3) 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; (4) maintain current information on the number of conditions for which screening is conducted in each State; and (5) disseminate available evidence-based guidelines related to diagnosis, counseling, and treatment with respect to conditions detected by newborn screening. (b) 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 quarterly; and (4) provides— (A) 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; (B) 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; (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 authorized under the Newborn Screening Saves Lives Reauthorization Act of 2014; and (E) other relevant information as determined appropriate by the Secretary. (c) In carrying out activities under this section, the Secretary shall ensure that such activities minimize duplication and supplement, not supplant, existing information sharing efforts.