Senate committee approves bill to create Kentucky Parkinson’s research registry, delays start to 2027

Senate Bill 27, a measure to establish a Kentucky Parkinson’s disease research registry and create standards for movement disorder centers, was amended by a committee substitute and passed with a favorable recommendation in a unanimous vote by a Senate committee.

The committee approved the measure during its meeting after sponsor Senator Brandon Storm introduced the substitute and described changes made since the bill’s initial hearing. "We actually have a representative here from UK in the event there's any difficult questions," Storm said, and summarized the substitute as defining what a movement disorder center is, requiring automated reporting and moving the implementation date to 2027.

The committee substitute adds two named advisory positions: one representative from the University of Kentucky School of Medicine with expertise in Parkinson’s disease and one representative from the University of Louisville School of Medicine with similar expertise. Senator Storm said those roles followed consultations with the University of Kentucky, the University of Louisville and the Michael J. Fox Foundation as part of drafting the substitute.

Jane Rice Williams, executive director of Parkinson's in Motion, testified in support of the bill and described the clinical challenges of diagnosing Parkinson’s disease. "Right now there's no way to diagnose Parkinson's except through watching somebody and talking to them and finding out about their symptoms," Williams said, noting there is no cure and that better tracking would support research and care.

Senator Storm said the registry would collect non‑identifying, aggregate clinical data to track diagnosis and care patterns and would include an opt‑out provision and a process to remove individuals who were inadvertently added. He said the substitute requires reporting to be automated rather than manual and that the registry would continue reporting to the committee annually during the interim.

Committee members voted to adopt the committee substitute and then voted unanimously to advance the bill as amended. The clerk’s roll call recorded an "aye" from each member present; the committee chair announced the bill "passes the favorable expression."

The panel’s action does not itself create the registry; the bill must next progress through the Senate chamber and any further legislative steps before becoming law. The substitute’s delayed effective date—moved to 2027—was described by the sponsor as intended to give the advisory group and implementing entities time to build required technical and governance processes.

Votes at a glance: the committee adopted Committee Substitute 1 for SB 27 and approved the bill with a unanimous recorded vote in committee.

Provenance: Topic introduction excerpt: "mister chairman. Members of the committee excuse me. Brandon Storm, senator of the 20 First District." (block_id: "block_84.565", local_start:0, local_end:99, evidence_excerpt:"mister chairman. Members of the committee excuse me. Brandon Storm, senator of the 20 First District.")

Topic finish excerpt (vote): "Aye. Vote is unanimous. Senate bill 27 is amended by its, committee substitute 1, passes the favorable expression." (block_id: "block_359.435", local_start:0, local_end:125, evidence_excerpt:"Aye. Vote is unanimous. Senate bill 27 is amended by its, committee substitute 1, passes the favorable expression.")