191.1825.  Registry established, purpose — start date — notification to patients. — 1.  Beginning January 1, 2024, the medical university shall establish a registry to collect data on the incidence of Parkinson's disease in Missouri and other epidemiological data as required in sections 191.1820 to 191.1855.  The database and system of collection and dissemination of information shall be under the direction of the medical university.  The medical university may enter into contracts, grants, or other agreements as are necessary for the implementation of the registry.

  2.  The registry shall become functional and able to collect reporting data by August 28, 2024.

  3.  All patients diagnosed with Parkinson's disease or parkinsonism, as determined by the advice of the advisory committee, shall be notified in writing and orally about the collection of information and patient data on Parkinson's disease and parkinsonism.  If a patient does not wish to participate in the collection of data for purposes of research in the registry, the patient shall affirmatively opt out in writing after an opportunity to review relevant documents and ask questions.  No patient shall be required to participate in the registry.