42 U.S.C. § 300b–11 — Clearinghouse of newborn screening information

(a) In general: Working through the Administrator of the Health Resources and Services Administration, and consulting the Directors of the CDC and NIH, the Secretary must build and maintain a central clearinghouse of current education, family support, research, and data on newborn screening. This clearinghouse must: (1) help parents, family members, health professionals, industry, and the public learn about and understand newborn screening; (2) raise awareness of newborn diseases and screening services for expectant people and families; (3) track quality measures for newborn screening, like false-positive rates, as the Advisory Committee (section 300b–10) decides; (4) track how many conditions each state screens for; and (5) share evidence-based guidelines for diagnosing, counseling on, and treating conditions that screening finds. (b) Internet availability: The Secretary, through the Administrator, must make sure the clearinghouse: (1) is available online; (2) has an interactive forum; (3) gets updated at least every three months; and (4) provides (A) links to government, nonprofit, and other websites of labs with proven newborn-screening expertise, that offer research-based information on available screening tests; (B) information about each state's newborn conditions and screening services from certified labs, including optional supplemental screening available in the state where a baby is born; (C) current research on both treatable and not-yet-treatable conditions with available screening tests; (D) information about federal funding for newborn and child screening, including grants under the Newborn Screening Saves Lives Reauthorization Act of 2014; and (E) any other relevant information the Secretary decides to include. (c) Nonduplication: In running the clearinghouse, the Secretary must avoid duplicating, and instead add to, existing efforts to share this kind of information.