As the first point of contact for families of infants who have tested positive for a heritable disorder, primary care providers are responsible for explaining screening results, making referrals for re-screening or diagnosis, and assisting the family in finding educational resources and support services. Access to accurate, up-to-date education materials related to both the general care of children with special health care needs, as well as disease-specific information is essential to successful care coordination.
The Information Workgroup will focus on access to genetic information, resources and disease management guidelines in the context of a medical home.
