Accelerating Discoveries in Newborn Screening

Every day, babies born in the United States receive comprehensive screening for treatable diseases. Newborn screening saves lives, and discoveries by researchers make it possible!

NBSTRN is designed for

access to millions of data points.
About NBSTRN

Learn how to get started using the NBSTRN tools and resources today.

Research advances newborn screening by developing new screening and diagnostic tests and by discovering new treatments.

The NICHD-supported Newborn Screening Translational Research Network (NBSTRN) accelerates these efforts by developing tools, resources, and expertise available to researchers, healthcare professionals, families, advocacy groups, and state newborn screening programs.

Sign up to learn more about how NBSTRN helps advance newborn screening research.

Longitudinal Pediatric Data Resource (LPDR)

A central goal for NBSTRN is to foster collaboration between research teams, State NBS programs, clinicians, advocacy groups, patients, and families. The LPDR houses millions of data points from ground-breaking studies available for data mining, visualization and secondary research.

33
STUDIES
68
COHORTS
1,830,493
PHENOTYPIC DATA POINTS
6 TB
OF DATA
8,833
PARTICIPANTS
2,370
GENOMIC DATA POINTS

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Funding

The Newborn Screening Translational Research Network (NBTRN) is a key component of the Hunter Kelly Newborn Screening Research Program. The Hunter Kelly Newborn Research Program is operated by the Intellectual and Developmental Disabilities Branch (IDDB) at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The American College of Medical Genetics and Genomics (ACMG) has operated the NBSTRN since 2008 with a contract from NICHD.

 

Partners
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Contact Us

Whether you are a researcher interested in NBS, a clinician caring for individuals with a condition identified by NBS, a parent or family member caring for a child with a genetic condition, we welcome you to join the NBSTRN.

This project is funded in whole with Federal funds from the NICHD, National Institutes of Health, Department of Health and Human Services, under Contract No. HHSN275201800005C.