The Senate Standing Committee on Health Services convened on December 2, 2025, to discuss Senate Bill 27, which aims to establish a Kentucky Parkinson's disease research registry. The bill's proponents emphasized the urgent need for such a registry, citing alarming statistics about the prevalence and economic impact of Parkinson's disease in the state and nationwide.

The executive director of Parkinson's in Motion, a nonprofit organization serving Appalachia, presented the bill, highlighting that approximately 1 million Americans currently live with Parkinson's, with 90,000 new diagnoses each year. The financial burden of Parkinson's disease is significant, with national costs estimated at $52 billion annually, projected to rise to $80 billion by 2037. In Kentucky alone, the direct and indirect costs for the 15,000 diagnosed individuals amount to about $725 million each year.

Senate Bill 27 proposes the creation of a registry overseen by the Cabinet for Health and Family Services, leveraging existing infrastructure used for stroke and cancer registries. The registry will study the incidence and prevalence of Parkinson's-related diseases and will include an advisory committee composed of various health professionals, including neurologists and public health experts. This committee will guide data collection and reporting, set to begin in 2026, while ensuring patient confidentiality and consent.

The bill also mandates a report from the Legislative Research Commission to assess the registry's effectiveness, with findings to be presented to the interim joint committee on health services. A dedicated public website will provide transparency regarding the registry's data, although no personal identifying information will be disclosed.

The meeting featured personal testimonies from individuals affected by Parkinson's disease, underscoring the lack of resources and specialists in Eastern Kentucky. The urgency of addressing this growing health crisis was palpable, with advocates expressing hope that the establishment of the registry marks a significant step toward better understanding and managing Parkinson's disease in the state.

As the committee deliberates on the bill, the potential for improved research and resources for Parkinson's patients in Kentucky remains a focal point of discussion, with stakeholders eager to see progress in addressing this critical health issue.