SB 27 approval will bring Parkinson's Disease Research Registry to the state
Kentucky will soon have a Parkinson's Disease Research Registry following a unanimous vote by both the House and Senate.
Due to the passage of Senate Bill 27, sponsored by Sen. Brandon Storm (R-London), the new registry will be established within the Cabinet for Health and Family Services. The cabinet secretary will create an advisory committee, set regulations, and designate Parkinson's and related diseases for reporting.
The advisory committee is required to include representatives from the University of Kentucky College of Medicine and the University of Louisville School of Medicine.
A system will be set up to collect and share data regarding Parkinson's disease, while ensuring patient safety by excluding personal information such as social security numbers and birthdates. Healthcare providers must submit reports beginning January 1, 2026, and patients will be given the option to opt out.
The registry's data will be accessible to researchers, and a public website will provide reports and information. The cabinet is required to submit annual updates to the legislature.
Jane Williams, executive director of local nonprofit Parkinson's in Motion, has been closely involved with SB 27, having testified in Frankfort. Williams said the registry is especially intended to provide demographic data to determine where individuals with Parkinson's are located.
'The first day we testified in the Senate, it was so moving to me that people in Frankfort were talking about Parkinson's disease,' Williams commented. She said securing the registry feels 'very humbling,' and she is 'very, very pleased.'
Funding for the registry will be discussed by the advisory board at a later date. Learn more at https://apps.legislature.ky.gov/record/25rs/sb27.html.
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