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ACMG Lands $12.5M for Newborn Screening Research Resource Center

NEW YORK (GenomeWeb News) – The American College of Medical Genetics and Genomics has received a $12.5 million contract from the National Institutes of Health to continue operating a center focused on supporting newborn screening research projects.

ACMG will use the five-year funding renewal from the Eunice Kennedy Shriver National Institute of Child Health and Human Development to continue to operate and enhance the Newborn Screening Translational Research Network(NBSTRN) Coordinating Center, ACMG said recently.

The NBSTRN's mission is to facilitate research aimed at improving health outcomes for newborns with genetic or congenital disorders by providing infrastructural support and community access to NBS resources.

The program provides help in accessing dried blood spots; collecting, analyzing, and sharing data; fostering a collaborative research community; and supporting development of new technologies and treatments.

The investigators the NBSTRN supports are seeking to improve the understanding of the conditions that are currently screened for or of those that may be added to screening programs, pilot test new conditions for newborn screening, assess how technologies such as genome sequencing maybe used in screening, identify the preferred technologies through comparative-effectiveness research, and provide the public with information about NBS.

The NBSTRN's research infrastructure includes a virtual repository of dried blood spots, a lab performance database, a longitudinal pediatric data resource, information about rules and regulations that are pertinent to NBS research, and guidance on ethical and legal issues related to NBS research.