Program seeks Council approval for an initiative titled “Newborn Screening Translational Research Network (NBSTRN) 2018.” This Network serve as a coordinating center for newborn screening-related research across NIH.
Newborn screening programs screen greater than 4 M infants per year to identify those at risk for congenital disorders with the recognition that early interventions can reduce morbidity and mortality. The goal of the NBSTRN is to facilitate research through assistance in accessing dried blood spots available through state screening programs, enable data collection, analysis and sharing of new technologies and treatments for newborn screening conditions, support exploration of Ethical, Legal, and Social Implications (ELSI) in newborn screening, and foster a community of collaborative research on new newborn screening conditions. This research informs the evidence review that evaluates nominations for conditions to be added to the Recommended Uniform Screening Panel (RUSP).
The NBSTRN is a resource focused on four main information technology solutions that support the collection, utilization, and sharing of materials and information for newborn screening research. These include:
- Virtual Repository of Dried Blood Spots
- Laboratory performance database used by all state newborn screening labs in the U.S.
- Longitudinal Pediatric Data Resource and Data Warehouse
- ELSI Advantage resource for newborn screening researchers with questions on ELSI issues.
This new cycle of the NBSTRN will continue the development of these resources with prioritization of data collection and harmonization for secondary purposes.
The NBSTRN addresses The Newborn Screening Saves Lives Reauthorization Act of 2014 legislation which encourages NIH to "continue carrying out, coordinating, and expanding research in newborn screening.” It also aligns with the NICHD Vision statements related to early recognition of fetal brain and other defects and development of therapeutic targets during most sensitive time periods as well as branch priorities that focus on research on newborn screening tests, conditions, and treatments.
Intellectual and Developmental Disabilities Branch
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