S.1417 - Newborn Screening Saves Lives Reauthorization Act of 2013113th Congress (2013-2014)
Summary: S.1417 — 113th Congress (2013-2014)
Introduced in Senate (08/01/2013)
Newborn Screening Saves Lives Reauthorization Act of 2013 - Amends the Public Health Service Act to extend and revise a grant program for screening, counseling, and other services related to heritable disorders.
Extends a grant program to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children. Expands the program to include evaluation of follow-up care for newborns and their families after screening and diagnosis.
Directs the Advisory Committee on Heritable Disorders in Newborns and Children to provide a priority review of a human drug application with respect to a nomination to the recommended uniform screening panel. Requires the Advisory Committee to meet in person at least four times each calendar year with at least two meetings in person.
Extends the clearinghouse for newborn screening information. Expands the duties of the clearinghouse to include: (1) maintaining current data on the number of conditions for which screening is conducted in each state; and (2) disseminating available evidence-informed guidelines related to diagnosis, counseling, and treatment with respect to conditions detected by newborn screening.
Extends requirements for the Secretary to provide for quality assurance of laboratories involved in screening newborns and children for heritable disorders.
Extends the Interagency Coordinating Committee on Newborn and Child Screening.
Authorizes the Secretary to have the Hunter Kelly Newborn Screening Research Program to: (1) provide research and data for newborn conditions under review by the Advisory Committee to be added to the Recommended Uniform Screening Panel; and (2) conduct pilot studies on conditions recommended by the Advisory Committee to ensure that screenings are ready for nationwide implementation.