The NewSTEPs Data Repository collects de-identified case-level data for individual cases including newborn screening public health surveillance case definitions, developed by the Health Resources and Services Administration (HRSA) in collaboration with the newborn screening medical sub-specialty community. The purpose of developing and implementing standard public health surveillance case definitions for newborn screening conditions is to allow for determination of the birth prevalence and incidence of disorders and allow comparisons of the prevalence as detected by NBS using consistent definitions. Consensus public health surveillance case definitions for newborn screening disorders allows for consistent categorization and tracking of short and long-term follow-up of identified newborns at the local, regional and national levels.
Instructions: Case data is organized in the NewSTEPs Repository by disorder category. To view a data dashboard for a particlular disorder, please select a disorder from the grid below. A Tableau Online account login is currently required to view these dashboards. Once logged in, you may scroll to the bottom of the page to view infographics for all fields collected for a specific disorder. Please not that you can filter the data by birth year, newborn screening program ID, and final diagnosis (if applicable), by using the drop down menus located at the top of each dashboard.