Resources for RCs

Advisory Committee on Heritable Disorders in Newborns and Children

HRSA Maternal and Child Health

National Assessment of the Newborn Screening Workforce for Metabolic Conditions, Phase Two Report

National Evaluation Reports

First Year and Appendix

Second Year

Third Year

Fourth Year

Newborn Screening Translational Research Network (NBSTRN)

  • The Newborn Screening Translational Research Network (NBSTRN) is a resource for investigators engaged in newborn screening related research.  The goal of the NBSTRN is to facilitate research to improve the health outcomes of newborns with genetic or congenital disorders through an infrastructure that provides the research community access to robust newborn screening resources.  To learn more about the tools NBSTRN offers, please click this link.

State Specific Birth Defects Profiles from NBDPN

  • The National Birth Defects Prevention Network (NBDPN) is a volunteer based organization which addresses issues related to birth defect surveillance, prevention and research. Through collecting state and national data, the NBDPN creates state profile templates which includes data regarding the number of cases and prevalence rates for 12 conditions. The national estimates are based on pooled data from states with active surveillance systems. States have tailored their profiles to include state-specific information on their surveillance systems and how birth defects data are used in their states. These state profiles were last updated February 2012.