Health Resources and Services Administration: Newborn Screening State Evaluation Program

The goal of the program is to reduce the morbidity and mortality associated with heritable disorders screened at birth. The purpose of this program is to evaluate the effectiveness of newborn screening programs by evaluating and assessing the effectiveness of screening, follow up, and referral to counseling or health care services. This will be accomplished by supporting state newborn screening programs in the implementation of a demonstration program to use quality indicator information, as determined by the HRSA-funded Newborn Screening Data Repository and Technical Assistance program (HRSA-18-080), to evaluate the effectiveness of their state newborn screening system. Quality indicators were created to provide longitudinal comparisons within newborn screening programs and to aggregate data at a national level. Quality indicators cover actions within the newborn screening system including assessing borderline results, eligible newborns, specimen collection, improper transport, and time of medical intervention. It is expected that the Newborn Screening Data Repository Technical Assistance program will be able to accept data into their data repository by September 2019.