Florida Launches Statewide Parkinson’s Disease Registry: A Major Step Toward Better Research and Care

New Parkinson’s Disease Registry Will Help Researchers Better Understand Parkinson’s Across Florida
Florida is taking an important step forward in the fight against Parkinson’s disease. Beginning in 2027, healthcare providers across the state will report Parkinson’s disease and atypical Parkinsonism cases to a new statewide registry. This effort will help researchers better understand who is affected, where Parkinson’s is most common, and how the disease impacts communities throughout Florida.

Why does this matter? The answers collected today could shape tomorrow’s treatments, improve access to care, and accelerate Parkinson’s research for future generations. Here's what Florida's new registry means for people living with Parkinson’s disease and their families.

Following the passage of House Bill 1443, signed into law on March 27, 2026, the Florida Institute for Parkinson’s Disease at the University of South Florida (USF) will establish and manage Florida’s first statewide Parkinson’s Disease Registry.

When Does Mandatory Reporting Begin?

Reporting Begins January 1, 2027
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Beginning January 1, 2027, physicians and other healthcare providers will be required to report new Parkinson’s disease and atypical Parkinsonism diagnoses to the registry. Starting in 2028, the Institute will publish annual reports that provide valuable information about Parkinson’s disease across Florida, including county-by-county statistics and demographic trends.

The registry represents a significant milestone in understanding one of the fastest-growing neurological diseases in the United States.

University of South Florida

Why is this Registry Important?

Florida has the highest percentage of residents living with Parkinson’s disease in the nation, making the state uniquely positioned to lead Parkinson’s research and public health initiatives.

According to the Parkinson’s Association of Southwest Florida (PASWFL), nearly 80,000 Floridians are currently living with Parkinson’s disease, and that number is expected to continue growing as the population ages.
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Until now, no comprehensive statewide database has existed to accurately track the disease. The new registry will allow researchers and public health officials to answer important questions, including:

• How many people are diagnosed each year?
• Which regions of Florida have the highest prevalence?
• Are diagnoses increasing over time?
• How do age, gender, race, and geography affect Parkinson’s disease?

This information can help healthcare systems better plan services while providing researchers with critical data needed to develop future treatments.

Privacy Concerns

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.

A Foundation for Future Research

Florida Registry for Better PD Research

Although early versions of the legislation included funding for Parkinson’s research, those funding provisions were ultimately removed before the bill became law.

Even so, organizations including the Michael J. Fox Foundation for Parkinson’s Research have praised the registry as an essential first step. By creating a centralized database, Florida is laying the groundwork for future research collaborations, clinical studies, and funding opportunities that could advance the understanding and treatment of Parkinson’s disease.
Researchers believe large, high-quality data collections like this registry are critical for identifying disease trends, improving patient care, and accelerating the development of new therapies.

What This Means for People Living with Parkinson’s
The registry will not change an individual's medical care immediately. However, over time it has the potential to improve healthcare planning, increase awareness of Parkinson’s disease throughout Florida, and support research that may lead to earlier diagnosis and better treatments.

For individuals and families living with Parkinson’s disease today, this represents hope that future generations may benefit from faster diagnoses, more personalized therapies, and improved access to specialized care.
As Parkinson’s research continues to evolve, statewide efforts like Florida’s registry demonstrate the growing commitment to understanding this complex neurological condition.

Start Living Well with PD Today
A diagnosis of any form of Parkinson’s can feel overwhelming. But with the right support and resources, individuals can maintain independence, quality of life, and emotional well-being.

For resources and support in navigating Parkinson’s, and related conditions, contact the Parkinson’s Association of Southwest Florida at www.paswfl.org or call 239-417-3465.

For over 25 years, PASWFL has provided free, high-quality services and programs to individuals and families touched by Parkinson’s disease throughout Southwest Florida. Our mission is simple: help people live well with Parkinson’s disease, regardless of 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
• Care partner support
• Support groups

There are no fees to become a member, and PASWFL welcomes anyone touched by Parkinson’s disease.

👉 Sign up for the PASWFL newsletter:
https://parkinsonassociationswfl.org/signup-enews.html
👉 Become a member—it’s free and confidential:
https://parkinsonassociationswfl.org/signup.html
To learn more, visit www.paswfl.org and discover the power of education, support, and community.