STORM'S PROPOSED PARKINSON'S REGISTRY TO IMPROVE RESEARCH AND TREATMENT APPROVED BY SENATE

STORM'S PROPOSED PARKINSON'S REGISTRY TO IMPROVE RESEARCH AND TREATMENT APPROVED BY SENATE

SB 27 approved by Senate on Friday, moves to House for consideration.

FRANKFORT KY (Feb. 28, 2025)—Legislation to create a Kentucky Parkinson's Disease Research Registry cleared the Senate on Friday, moving one step closer to becoming law. Sen. Brandon Storm, R-London, is championing Senate Bill (SB) 27 in collaboration with Parkinson's In Motion of London, KY, The Michael J. Fox Foundation (MJFF), and the University of Kentucky, and the University of Louisville to enhance research and treatment for Parkinson's disease.

SB 27 would

• create a Parkinson's Disease Research Registry under the Kentucky Cabinet for Health and Family Services with an opt-out provision,

• collect critical and generic data to improve treatment and research, which would be confidential and does not include identifying information, 

• establish an advisory committee to guide development and ensure meaningful data use, and

• support research by identifying high-risk groups, studying disease trends, and investigating environmental factors.

Storm was joined in committee on Wednesday by the university representatives. A Senate committee substitute adopted in the committee added a representative from medical schools at UK and UofL with specific expertise who would serve on the advisory committee. Additional changes include ensuring reporting is automated and delaying implementation day is moved to 2027.

Parkinson's, among the fastest-growing neurological diseases, claimed 548 Kentuckians in 2022. It damages dopamine-producing cells, impairing movement, cognition, and mood. While its cause is unclear, research links it to genetics, toxins, and aging.

If enacted, Kentucky would join 14 states with similar registries and advance efforts to better understand and combat this disease. The bill aligns with MJFF's broader push to expand research, increase biomarker access, and enhance patient protections nationwide.

SB 27 now qualifies for consideration by the House.

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Sen. Brandon J. Storm, R-London, represents the 21st Senate District, including Casey, Lincoln, Laurel, and Rockcastle Counties. He serves as chair of the Senate Judiciary Committee and as Senate co-chair of the Juvenile Justice Oversight Council. Storm is also a member of the Senate Committees on Transportation and on Banking and Insurance. He serves as a liaison member of the Budget Review Subcommittee on Justice. A 2023 esteemed Henry Toll Fellowship graduate, Storm was the only Kentuckian to participate in the program. 

For a high-resolution .jpeg of Storm, please visit: https://legislature.ky.gov/Legislators/Pages/Legislator-Profile.aspx?DistrictNumber=121.

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