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SB 1802

Public Records/Parkinson’s Disease Research Program Registry

2025 Regular Session Introduced by Alexis Calatayud

Florida bill to create Parkinson's disease research registry with public records exemptions for participant health data; died in committee as companion bill passed instead.

Died in Health Policy, companion bill(s) passed, see CS/CS/HB 1545 (Ch. 2025-188)
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Bill Summary · SB 1802

Legislative bill overview

SB 1802 proposed establishing a Parkinson's Disease Research Program Registry in Florida and modifying public records exemptions related to registry participant data. The bill sought to create a mechanism for collecting and managing health information from individuals with Parkinson's disease while protecting certain personally identifiable information from public disclosure.

Why is this important

Research registries can accelerate medical discoveries by connecting researchers with patient populations and enabling longitudinal studies. However, balancing research access with privacy protections for vulnerable populations with chronic diseases raises important questions about data security, informed consent, and who benefits from the collected information.

Potential points of contention

  • Privacy vs. research access: Determining which health data should be publicly exempt while still enabling legitimate research purposes
  • Data security standards: What safeguards must be in place to protect sensitive health information from misuse or breach
  • Participant recruitment and consent: Whether individuals understand how their data will be used and who can access it for research purposes

Compiled from official sources — confirm details with the bill’s official record.

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