§ 300b–9 — Evaluating The Effectiveness Of Newborn And Child Screening And Followup Programs

(a) The Secretary shall award grants to eligible entities to provide for the conduct of demonstration programs to evaluate the effectiveness, including with respect to timeliness, of screening, followup, counseling or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children. (b) A demonstration program conducted under a grant under this section shall be designed to evaluate and assess, within the jurisdiction of the entity receiving such grant— (1) the effectiveness of screening, treatment, counseling, testing, followup, or specialty services for newborns and children at risk for heritable disorders in reducing the morbidity and mortality associated with such disorders, including, as appropriate, through the assessment of health and development outcomes for such children through adolescence; (2) the effectiveness of screening, treatment, counseling, testing, followup, or specialty services in accurately and reliably diagnosing heritable disorders in newborns and children in a timely manner; (3) the availability of screening, counseling, testing or specialty services for newborns and children at risk for heritable disorders; (4) methods that may be identified to improve quality in the diagnosis, treatment, and disease management of heritable disorders based on gaps in services or care; or (5) methods or best practices by which the eligible entities described in section 300b–8 of this title can achieve in a timely manner— (A) collection, delivery, receipt, and screening of newborn screening specimens; and (B) diagnosis of heritable disorders in newborns. (c) To be eligible to receive a grant under subsection (a) an entity shall be a State or political subdivision of a State, or a consortium of two or more States or political subdivisions of States.