SB 553 - This act establishes the "Missouri Parkinson's Disease Registry Act". Beginning January 1, 2024, the University of Missouri, or any medical research university in a memorandum of understanding with the University, shall establish a Parkinson's disease registry in order to collect data on the incidence of Parkinson's disease in Missouri, as well as other epidemiological data, as described in the act. All patients with Parkinson's disease or similar symptoms shall be given the opportunity to opt out of participation in the registry. The University shall establish an advisory committee in order to assist in the development of the registry and to determine the data to be collected.
Beginning August 28, 2024, all cases of Parkinson's disease and similar symptoms diagnosed or treated in Missouri shall be reported to the registry, as described in the act. The University may enter into agreements to share information in the registry with other states, the federal government, local health agencies, or researchers; provided, that the confidentiality of the information is maintained. The registry shall not contain any identifying information about patients. Finally, the University shall provide a report to the General Assembly before January 1 of each year summarizing the year's incidence of the disease by county and other demographic information.
This act is identical to a provision in the truly agreed to and finally passed SS/HB 402 (2023) and substantially similar to HB 822 (2023).
SARAH HASKINS