The department shall develop and make available treatment control test specimen kits to physicians and patients as medically indicated to effectively monitor treatment, and provide the treatment control test specimen kit and the laboratory evaluation of the treatment control test specimen at no cost to the patient.
The department shall report the laboratory results of the treatment control tests to the physician or patient submitting the treatment control test specimen. If the treatment control test specimen is submitted directly by the patient, the patient shall identify a physician who shall receive a copy of the laboratory results.
The department shall make arrangements for the medically indicated treatment of the metabolic defect in diagnosed cases of hemoglobinopathy, phenylketonuria, galactosemia, hypothyroidism, and/or congenital adrenal hyperplasia when the patient is uninsured or is unable to pay the cost of treatment because of a lack of available income. The arrangements include referral to appropriate agencies which have financial resources to pay for medically indicated treatment such as private health insurance companies, medical assistance, MinnesotaCare, and Services for Children with Disabilities.
The department shall maintain a registry of all diagnosed cases of hemoglobinopathy, phenylketonuria, galactosemia, hypothyroidism, and congenital adrenal hyperplasia reported to the department. The registry shall be updated not more often than annually by direct contact with the patient to determine their address and their need for medical treatment services, educational materials, and counseling related to their metabolic disease. The registry shall include the following minimum data on each patient:
The department shall treat all data in the registry as private pursuant to Minnesota Statutes, section 13.3805, the Minnesota Government Data Practices Act.
Minn. R. agency 144, ch. 4615, METABOLIC DEFECT TESTING, TREATMENT, AND REGISTRY, pt. 4615.0760
Statutory Authority: MS s 144.125; 144.128