Establish system linkages to better serve children and adults with genetic disorders and/or special health care needs.
- Continue to collaborate with the Newborn Screening Program and Birth Defects Surveillance Systems to provide seamless services in follow up management
- Establish connections with vital records and other children's databases in order to identify health services needed by high risk populations and children with special health care needs
- Explore integrating the genetic data system with public health for state system linkages, such as chronic disease, environmental health, or cancer registry
- Address legislatively the need to incorporate a data share rule for system linkages
Assure early identification, evaluation and genetic counseling or education for all children and adults with birth defects, heritable disorders and developmental delay
- Promote and disseminate guidelines for genetic referrals
- Expand genetic services to include those which focus on adult onset problems such as cancer, hemochromatosis, asthma, or diabetes mellitus
- Promote screening for adult orders disorders if available and appropriate
- Increase identification, education and promotion of services to patients and families for disorders for which new diagnostic tests and/or treatment/surveillance modalities are available
- Examine issues related to transition from pediatric to adult health care systems for young adults with developmental disabilities, heritable disorders and birth defects, and address barriers to continuity of care for this population.
- Provide appropriate follow up, diagnosis and treatment for infants with positive screening tests in accordance with nationally recognized guidelines
- Increase utilization of cancer risk assessment services by marketing the cancer risk assessment programs
- Promote use of family history to health care providers and public health for genetic risk assessment of common chronic adult conditions in order to reduce, delay or prevent disease
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