Long-term follow-up to ensure quality care of individuals diagnosed with newborn screening conditions: early experience in New England.

To fulfill the purpose of newborn screening, comprehensive newborn screening programs must ensure that infants and children with newborn screening conditions are not only diagnosed but also they maintain engagement in appropriate lifespan and family-centered care for best outcomes. To ensure success, monitoring and care-coordination requires a systems-based approach to streamline the significant surveillance activities, which must not overburden the critical core functions of newborn screening nor the health care delivery system. Furthermore, treatment and care can only be improved by translating reliable knowledge into changes in practice, a process that requires evaluations of outcomes that are confirmable at the local level and translatable into a larger, e.