In October of 2008, the American College of Medical Genetics (ACMG) was awarded a 5-year contract by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to develop the National Coordinating Center for the Newborn Screening Translational Research Network (NBSTRN). NBSTRN’s basic goal is to develop a system in which long-term follow-up and outcome data can be collected by providers. This can be used for several purposes, including developing the clinical history of the treated disease, some of which can be 1) made available in some form to newborn screening programs as a means of evaluating the success of their screening programs, and 2) the basis on which next generation treatments might be evaluated. For conditions that are considered candidates for NBS, a system will be developed in which the clinical histories can be defined and in which clinical trials can be pursued.
For information regarding NBSTRN Workgroups, click here.