Development of requirements and a pilot registry for long-term follow-up of children with heritable conditions.

: Advances in newborn screening (NBS) have led to earlier detection of heritable conditions. Little is known about the natural history of these conditions or the long-term benefits of NBS. This study will examine the user and data requirements necessary to develop a long-term follow-up registry for these patients. The system will subsequently be analyzed to determine its usefulness for research and reporting outcomes after long-term follow-up of patients.