Health Resources and Services Administration: Newborn Screening Technical Assistance and Data Repository Program

The goals of the program are to:

1) Develop and coordinate educational activities and information related to newborn screening that are responsive to information gaps identified by providers and public health professionals;
2) Incorporate health information technology to develop a National Newborn Screening Quality Measures Data Repository to standardize, maintain, and analyze quantitative quality measures information in order to monitor and evaluate the impact of state and territorial newborn screening programs and support short term monitoring of children with congenital conditions identified by newborn screening;
3) Support activities that will strengthen the integration of child health information systems, laboratory performance and quality assurance, short and long term newborn screening follow-up and public health interactions at the community, state, regional, and national levels;
4) Provide a forum for timely, interactive communication between key state and public health stakeholders in the areas of newborn screening;
5) Develop and implement an innovative national quality assurance/enhancement certification program, referred to as the “Newborn Screening Quality Certification,” for state newborn screening systems in conjunction with HRSA, Centers for Disease Control and Prevention (CDC) and the Association of Public Health Laboratories (APHL);
6) Support training opportunities for public health practitioners in the areas of newborn screening; and
7) Coordinate and provide assistance to MCHB funded programs, including but not limited to the National Coordinating Center for the Regional Collaboratives, the Regional Genetic and Newborn Screening Service Collaboratives and the Clearinghouse of Newborn Screening Information. Form partnerships with various stakeholders including federal and non-federal organizations for innovative methods of data collection, quality improvement and educational outreach.

Activities proposed are expected to support new and ongoing efforts at the state, regional, and national levels to increase awareness, knowledge, and understanding of newborn screening, to facilitate harmonization of newborn screening activities, and to improve the quality of newborn screening and related genetic services across the United States through innovation and technology.