Newborn Screening State Evaluation Program

This notice solicits applications for the Newborn Screening State Evaluation Program.
The purpose of this program is to collect data in order to improve evaluation of state newborn screening programs and to build state-level capacity to assess and report on the effectiveness of screening, including timeliness, follow up, counseling, and health care services, in reducing the morbidity and mortality caused by heritable disorders in newborns and children. This demonstration program will evaluate the effectiveness of state newborn screening systems by collecting data on newborn screening quality indicator information. Quality indicators, determined by the HRSA-funded Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs), cover actions within the newborn screening system including assessing false-positive rates, borderline results, screening of eligible newborns, specimen collection time and transport rates, and time of medical intervention. They provide longitudinal comparisons within newborn screening programs and aggregate data at a national level. By building state level data capacity to evaluate their newborn screening processes, states will identify gaps and challenges within their systems. Data will inform state programs on the validity of newborn screening results: whether infants with heritable disorders are being diagnosed and treated in a timely manner, and receiving proper follow-up counseling and healthcare services. This will ultimately, improve health outcomes for children with heritable disorders.