Long-Term Follow-Up for Metabolic Disorders
South Dakota Codified Law 34-24-24 , Newborn Metabolic Statute states, "It shall be the responsibility of the department of health to follow the development of all children carrying the syndrome of any metabolic disease to ensure that those persons responsible for the care of the child are fully informed of accepted medical procedures for the detection, prevention, and treatment of such condition."
Long-term follow-up (LTFU) begins when a child who is a resident of South Dakota is diagnosed with a metabolic disorder; follow-up continues up to age 21. LTFU tracks the health and developmental status of the child to help ensure a continuum of care. Communication is established with the primary care provider, specialty care providers, or other support services and the parent/caregiver. This helps ensure parents/caregivers are fully informed of the care and treatment of the metabolic disorder. Data collected is used to identify needed resources for families impacted by metabolic disorders and barriers encountered in accessing those resources. A brochure detailing the South Dakota Metabolic Long-Term Follow-Up Program is available for physicians and parents.