Newborn screening is a highly successful public health program that has led to major improvements in outcomes for a variety of conditions otherwise associated with long-term disability and even death. 1 In the United States, newborn screening is provided to every newborn, regardless of circumstance, leading to the identification of .13 000 newborns with a significant condition each year. 1 Most of these individuals require specialized care over their life span. However, public health involvement in newborn screening typically ends once the condition has been diagnosed. This can lead to gaps in care and impede the ability to collect the data necessary for quality improvement and assess treatment effectiveness.