Inborn Errors of Metabolism Collaborative: large-scale collection of data on long-term follow-up for newborn-screened conditions.
Susan A BerryNancy D LeslieMathew J EdickSally HinerKaitlin JusticeCynthia CameronPublished in: Genetics in medicine : official journal of the American College of Medical Genetics (2016)
Large-scale prospective data can be collected for individuals with rare conditions, permitting enhanced decision making for clinical management and supporting decision making in public health newborn screening programs.Genet Med 18 12, 1276-1281.