Florida Launches First Statewide Parkinson's Disease Registry — What Nearly 80,000 Residents Need to Know

Florida is home to more people living with Parkinson's disease than any other state in the country. Now, thanks to newly signed legislation, the state is finally building a system to track and understand the disease at scale. The Florida Institute for Parkinson's Disease at the University of South Florida will establish a statewide registry to collect and monitor data on Parkinson's disease and atypical Parkinsonism.

But what does a "registry" actually change for patients and families living with Parkinson's today — and why does it matter now? Keep reading to learn more.

The registry was created under House Bill 1443, signed into law on March 27. Starting January 1, 2027, healthcare providers across Florida will be required to report Parkinson's cases to the registry. By 2028, the Florida Institute for Parkinson's Disease plans to begin publishing reports on the disease's demographics statewide, including county-by-county data — giving researchers, policymakers, and advocacy groups a clearer picture of where Parkinson's is most concentrated and who it affects.

This matters because Florida already leads the nation in the percentage of residents diagnosed with Parkinson's disease, a progressive disorder of the central nervous system that primarily affects movement and cognitive function. According to the Parkinson's Association of Southwest Florida, nearly 80,000 Floridians currently live with the disease.

Notably, a funding provision that would have supported new research was stripped from the final bill. Still, according to the Michael J. Fox Foundation for Parkinson's Research, the registry represents the first step toward building a research consortium that can pursue funding and studies down the road. Data collection, in other words, comes before dollars — but it's a necessary foundation.

Will My Personal Information Be Shared?
To accurately track the disease over time and avoid duplicate records, providers will submit patient information to the confidential registry.
The information reported to the registry is expected to include:

• Patient identifiers (such as name and date of birth) to prevent duplicate records
• Basic demographic information (age, sex, race/ethnicity, county of residence)
• Diagnosis (Parkinson's disease or atypical parkinsonism)
• Date of diagnosis
• Treating healthcare provider
• Clinical information and treatment measures related to Parkinson's disease

Your personal information will not be available to the public. Florida law protects registry records from public disclosure, and only summarized, de-identified data, such as statewide and county-level statistics, will be published.
Under the final version of Florida House Bill 1443, there is no opt-out provision, meaning healthcare providers are required to report eligible cases to the registry. An earlier version of the companion bill (SB 1684) did include language allowing patients to opt out of having their personally identifying information included in the registry, however the final bill does not include that language. The goal is to help researchers better understand Parkinson's disease, improve care, and advance future treatments while protecting patient privacy.

Why Support Matters Right Now
A Parkinson's diagnosis — whether it's classic Parkinson's disease or an atypical Parkinsonism — can feel overwhelming. But with the right support and resources, individuals can maintain independence, quality of life, and emotional well-being while research and policy catch up.

That's where local support becomes essential. For resources, referrals, and guidance in navigating Parkinson's and related conditions, contact the Parkinson's Association of Southwest Florida (PASWFL) at www.paswfl.org or call 239-417-3465.

For more than 25 years, PASWFL has provided free, high-quality programs to individuals and families touched by Parkinson's disease in Southwest Florida. Their mission is simple: help people live well with PD, no matter where they are in their journey.

Each week, PASWFL offers more than 25 free programs and support groups, including:

• Wellness and fitness classes
• Speech exercise classes
• Educational seminars
• Support for care partners
• Support groups

There are no membership fees, and PASWFL welcomes anyone touched by Parkinson's disease.

Take the First Step Toward Living Well
If you suspect early Parkinson's or have been recently diagnosed, you don't have to face it alone.
👉 Sign up for the PASWFL newsletter
👉 Become a member — it's free and confidential
Visit www.paswfl.org to learn more and discover the power of support, education, and community.