NEW YORK (GenomeWeb News) – The American College of Medical Genetics has received a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development to establish a national system for increasing knowledge about genetic diseases that are being considered for newborn screening programs.
The $13.5 million, five-year grant will establish a Newborn Screening Translational Research Network Coordinating Center and a network of state newborn screening programs and clinical centers. NICHD said the center will develop a national research informatics system for investigators and policy makers that functions alongside the newborn screening network.
ACMG also will establish and run a repository of residual dried bloodspots for newborn samples stored in the centers. The program also will facilitate research on screened and treated patients and will speed research on the development of new methods and technologies.
Michael Watson, ACMG’s executive director, said in a statement that the support “will enable us to improve newborn screening, the care of patients identified in newborn screening, and our knowledge of the conditions that might be added to newborn screening.”
“We can also assess how best to confirm diagnoses, initiate and follow existing and new treatments and improve their effectiveness, and educate parents and care providers about this growing realm of diagnosing and treating rare genetic disorders in children," NICHD Director Duane Alexander added in the statement.