Long-term follow-up includes assurance and provision of quality chronic disease management, condition-specific treatment and age-appropriate preventive care throughout the lifespan. The promise of NBS is that it saves lives and improves health. Statewide service systems such as newborn screening, early hearing detection programs, birth defects registries, children with special health care needs and early intervention programs provide opportunities to identify children with heritable disorders and initiate the continuum of follow up activities. The Workgroup builds on efforts currently underway in Region 4 to define a fully-functioning long-term follow-up system and identify questions to be answered by long-term follow-up data, including condition specific questions.
Log-in to the Public Health Long-term Follow-up Workgroup member site here: https://connect.mphi.org/sites/region4genetics/
If you do not have a user name and password, or have lost your log-in information, please email firstname.lastname@example.org.