The NewSTEPs data repository captures information about newborn screening laboratory and follow-up programs in a centralized, secure database accessible by authorized users anywhere. Newborn screening programs can explore repository data to improve quality and meet local program needs. The data repository is funded under a cooperative agreement with the Health Resources and Services Administration.
What data is being collected?
- State Profile Information (e.g., disorders screened, newborn screening fees, annual births, program contact information, and dried blood spot storage conditions and retention time). Programmatic Information (e.g., policies, health information technology, advisory committee practices).
- NBS Public Health Surveillance Case Definitions, as defined by the medical community, for most of the core Recommended Uniform Screening Panel (RUSP) NBS disorders. Case data (e.g., sex, race, gestational age, time elapsed for different NBS services, type of disorder)
- Quality Indicators (e.g., percent of dried blood spots specimens missing essential information, percent of eligible newborns not receiving valid NBS test, percent of loss-to-follow-up).
How is the data being used?
Newborn screening programs that enter data into the NewSTEPs repository will have access to their own data plus aggregate data from other participating NBS programs