The American College of Medical Genetics and Genomics (ACMG) has been awarded a five-year extension of its NICHD contract for The Newborn Screening Translational Research Network (NBSTRN). The NBSTRN will continue its work as a key component of the Hunter Kelly Newborn Screening Research Program with the goal of supporting ground-breaking research in newborn screening.
The contract, worth $13 million, from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health will cover work to be completed through September 2023. The NBSTRN began in 2008 as an effort to engage a variety of stakeholders across the NBS system; and over the past ten years has matured into a dynamic and committed network of researchers, public health professionals and clinicians.
"We are thrilled to be able to continue to build upon our decade of work and we believe that the resources we have built are essential to the Newborn Screening community. We look forward to growing the network and enhancing the tools and resources in the next 5 years," said Michael S. Watson, PhD, FACMG, Project Director of the NBSTRN.
NBSTRN supports a number of research projects throughout the United States working to:
- discover and validate novel technologies to screen and diagnose disease;
- understand the best approach to the clinical care of newborns including execution of clinical trials and application of cutting edge treatments and management strategies;
- coordinate multistate pilot studies of conditions considered candidates for addition to newborn screening;
- pilot new technologies and treatments;
- collect, analyze and disseminate longitudinal health and genomic data
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About the Newborn Screening Translational Research Network
The Newborn Screening Translational Research Network (NBSTRN) provides resources for investigators engaged in newborn screening related research. This research includes new technology development, tools for developing the clinical history of genetic disorders, and new treatment development.
The NBSTRN is funded by a contract from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH) to the American College of Medical Genetics and Genomics. The NBSTRN works in collaboration with the Mayo Clinic, Association for Public Health Laboratories (APHL), American Academy of Pediatrics (AAP), Genetic Alliance (GA), Health Resources and Services Administration (HRSA), National Library of Medicine (NLM), National Center for Advancing Translational Science (NCATS), and Centers for Disease Control and Prevention (CDC).
For more information on the mission and scope of the work of the NBSTRN, visit http://www.nbstrn.org.
About the American College of Medical Genetics and Genomics and ACMG Foundation for Genetic and Genomic Medicine
Founded in 1991, ACMG is the only nationally recognized medical society dedicated to improving health through the clinical practice of medical genetics and genomics. The American College of Medical Genetics and Genomics provides education, resources and a voice for more than 2,200 biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other healthcare professionals, nearly 80% of whom are board certified in the medical genetics specialties. The College's mission is to develop and sustain genetic initiatives in clinical and laboratory practice, education and advocacy.
Three guiding pillars underpin ACMG's work: 1) Clinical and Laboratory Practice 2) Education and 3) Advocacy. Genetics in Medicine, published monthly, is the official ACMG peer-reviewed journal. ACMG's website offers a variety of resources including Policy Statements, Practice Guidelines, Educational Resources, and a Find Genetic Services tool. The educational and public health programs of the American College of Medical Genetics and Genomics are dependent upon charitable gifts from corporations, foundations, and individuals through the ACMG Foundation for Genetic and Genomic Medicine.