(1) SHORT TITLE.—This section may be cited as the “Parkinson’s Disease Research Act.”
(2) LEGISLATIVE FINDINGS.—The Legislature finds that:(a) Parkinson’s disease is a progressive neurological disorder affecting approximately 1 million Americans, with an estimated 90,000 new diagnoses each year.
(b) Currently, there is no cure for Parkinson’s disease and innovative research is essential to advance therapies, improve patient outcomes, and alleviate the burden of the disease.
(3) DEFINITIONS.—As used in this section, the term:(a) “Board” means the Parkinson’s Disease Research Board.
(b) “Consortium” means the Consortium for Parkinson’s Disease Research.
(4) CONSORTIUM FOR PARKINSON’S DISEASE RESEARCH.—(a) There is established within the University of South Florida the Consortium for Parkinson’s Disease Research, which shall consist of public and private universities and academic medical centers. The purpose of the consortium is to conduct rigorous scientific research and disseminate such research.
(b) The Parkinson’s Disease Research Board is established to direct the operations of the consortium. The board shall be composed of one member appointed by the President of the Senate, one member appointed by the Speaker of the House of Representatives, and members representing each participating university or academic medical center, appointed by the president or chief executive officer of each participating university or academic medical center. Board members, other than those appointed by the President of the Senate or the Speaker of the House of Representatives, must have experience as a movement disorder specialist and in informatics or population health research and Parkinson’s disease research. Members shall be appointed to 3-year terms and may be reappointed to serve additional terms. The chair shall be elected by the board from among its members to serve a 2-year term. The board shall meet at least semiannually at the call of the chair or, in his or her absence or incapacity, the vice chair. Four members constitute a quorum. A majority vote of the members present is required for all actions of the board. The board may prescribe, amend, and repeal a charter governing the manner in which it conducts its business. Board members shall serve without compensation, but are entitled to receive reimbursement for travel expenses by the consortium or the organization he or she represents in accordance with s. 112.061. (c) The consortium shall be administered by a director, who shall be appointed by and serve at the pleasure of the board. The director shall, subject to the approval of the board:1. Propose a budget for the consortium.
2. Foster the collaboration of scientists, researchers, and other appropriate personnel in accordance with the consortium’s charter.
3. Engage individuals in public and private university and academic medical center programs relevant to the consortium’s work to participate in the consortium.
4. Identify and prioritize the research to be conducted by the consortium.
5. Prepare a plan for Parkinson’s disease research for submission to the board.
6. Apply for grants to obtain funding for research conducted by the consortium.
7. Perform other duties as determined by the board.
(d) The board shall annually adopt a plan for Parkinson’s disease research. The plan must organize a program of research that contributes to the body of scientific knowledge on the causes, mechanisms, and potential treatments for Parkinson’s disease and the prevalence of Parkinson’s disease in first responders. The board must award funds to members of the consortium to perform research consistent with the plan.
(e) By October 15 of each year, the board shall issue a report to the Governor, the President of the Senate, and the Speaker of the House of Representatives on research projects, research findings, and community outreach initiatives conducted or funded by the consortium. Beginning on October 15, 2028, and annually thereafter, the report shall include a summary update on the incidence and prevalence of Parkinson’s disease and atypical parkinsonism in the state by county, how many records have been included and reported into the registry, and demographic information such as patients by age, gender, and race.
(f) The provisions of this section shall be implemented to the extent of available appropriations contained in the annual General Appropriations Act for such purpose.
(5) PARKINSON’S DISEASE REGISTRY.—(a) Subject to a specific appropriation, the Florida Institute for Parkinson’s Disease within the University of South Florida shall establish and maintain a statewide Parkinson’s disease registry to ensure that the Parkinson’s disease and atypical parkinsonism performance measures required to be submitted under paragraph (b) are maintained and available for use to improve or modify the Parkinson’s disease and atypical parkinsonism care system, ensure compliance with standards and nationally recognized guidelines, and monitor Parkinson’s disease and atypical parkinsonism patient outcomes.
(b) Physicians licensed under chapter 458 or chapter 459, pursuant to ss. 458.352 and 459.075, and advanced practice registered nurses, pursuant to s. 464.0124, shall regularly report to the statewide Parkinson’s disease registry information containing nationally recognized Parkinson’s disease and atypical parkinsonism performance measures. (c) Beginning January 1, 2028, the Institute for Parkinson’s Disease within the University of South Florida shall create and maintain a public website dedicated solely to the Parkinson’s disease registry which must include, at a minimum, downloadable annual reports on the incidence and prevalence of Parkinson’s disease and atypical parkinsonism, information on the consortium, and other information as determined by the board. The website shall be updated on or before January 1, 2029, and annually thereafter.
