NewSTEPs
NewSTEPs (The Newborn Screening Technical assistance and Evaluation Program) is an informatics project by the Association of Public Health Laboratories (APHL) for newborn screening programs that offers a data repository as well as a continuous quality improvement resources. Monthly data is sent by state and partnered newborn screening programs in various categories, including testing and specimen collection metrics as well as metrics on confirmed cases of screened conditions discovered through newborn screening testing.
Newborn screening programs and partners are only asked to report metrics they are able to provide. Some statistics are considered priority metrics that laboratories are most likely to track, such as unsatisfactory specimens, time from birth to reporting,
Background
State-mandated newborn screening programs began in 1963 in Massachusetts, Delaware, Vermont, and Oregon adopted Robert Guthrie’s bacterial assay for detection of phenylketonuria (PKU). Several more conditions have been added since then. The U.S. Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children convenes annually to review recommendations for addition to the Recommended Uniform Screening Panel, considered the core panel for laboratory newborn screening. As of 2022, the RUSP lists 37 core disorders and 26 secondary disorders suggested for inclusion in states’ newborn screening panels. Adoption of testing is determined by state advisory boards and legislatures. Most states do not include all testing on the RUSP and some feature additional testing to the RUSP. As such, there is a need for a centralized repository of information for comparison across state programs. NewSTEPs was created in 2015 with funding from the Health Resources and Services Administration of the U.S. Department of Health and Human Services (HHS).
Submitted by Alyssa Rapp
