42 U.S.C. § 300b–9 — Evaluating the effectiveness of newborn and child screening and followup programs

(a) In general: The Secretary must give grants to eligible entities to run demonstration (test) programs. These programs evaluate how well screening, follow-up, counseling, or health care services work — including how quickly they happen — at cutting down sickness and death from heritable disorders in newborns and children. (b) Demonstration programs: Each test program must study, within the area the grantee covers: (1) whether screening, treatment, counseling, testing, follow-up, or specialty services reduce sickness and death from heritable disorders in at-risk newborns and children, including by tracking health outcomes into the teenage years; (2) whether those same services accurately and quickly diagnose heritable disorders; (3) whether screening, counseling, testing, and specialty services are actually available to at-risk newborns and children; (4) ways to improve the quality of diagnosis, treatment, and disease management by identifying gaps in services or care; and (5) best practices that let the entities described in section 300b–8 speed up (A) collecting, delivering, receiving, and screening newborn specimens and (B) diagnosing heritable disorders in newborns. (c) Eligible entities: To qualify for this grant, an entity must be a state, a political subdivision of a state, or a group of two or more states or subdivisions working together.