On March 25, 2025, Kentucky became the 15th state to take steps to create a Parkinson’s disease registry. This move will create a rich statewide data source to uncover and develop new insights to speed research breakthroughs and improve access to care.

The registry bill was signed into law by Governor Andy Beshear (D) just two months after being introduced by bill sponsor Senator Brandon Storm (R-21). It passed with unanimous bipartisan support in both legislative chambers.

The state will now create the Kentucky Parkinson’s Disease Research Registry within the Cabinet for Health and Family Services. This new program will allow the state to collect and analyze health and demographic information about the nearly 5,000 Kentuckians living with Parkinson’s disease and those diagnosed in the future.

“Parkinson’s disease presents uniquely in everyone, differing in causes, symptoms, progression and treatment responses,” said Zach Hardy, MJFF’s senior state government relations manager. “With more information about individual cases, researchers can recognize potential disease patterns and develop more effective treatments, preventative strategies and cures.” 

With this new registry, Kentucky joins California, Connecticut, Maryland, Massachusetts, Missouri, Nebraska, Nevada, New York, Ohio, South Carolina, Utah, Virginia, Washington and West Virginia in taking steps to improve our understanding of Parkinson’s and guide research, health care and policy decisions. Lawmakers in Hawai’i, Indiana, New Jersey, Oregon and Wisconsin are also considering registry legislation this year. 

Together with local community members and groups like Parkinson’s In Motion, MJFF worked with legislators to develop and advocate for the Kentucky legislation. Parkinson’s In Motion Executive Director Jane Williams testified on behalf of the bill before the Kentucky State Senate. During her testimony, Jane shared her personal experience living with Parkinson’s and why she believes the state should invest in a registry. 

Care partner and policy advocate Joanie Prentice also shared her family’s Parkinson’s journey with members of the Kentucky General Assembly. Jane, Joanie and others highlighted the power of personal storytelling in advocacy as they built and secured unanimous support for the bill’s passage. 

Stay tuned as the Kentucky Cabinet for Health and Family Services begins implementing this critical initiative in the months to come. In the meantime, learn more about MJFF’s 2025 policy priorities for state and federal governments and sign up for the Parkinson’s Policy Network to join advocates like Joanie who make a difference for the Parkinson’s community every day.