Effective follow-up for children with heritable disorders provides “just in time information” to the child’s family and medical home. Statewide service systems such as newborn screening, early hearing detection programs, birth defects registries and early intervention programs provide opportunities to identify children with heritable disorders and initiate the continuum of follow-up activities.
The Follow-Up Workgroup will focus on protocols and practices for providing information to primary care providers and families at the time of identification (positive screen or report) and improving communication practices between those identifying children with a heritable disorder and the primary care physician.
