THE BILL ITSELF
CS/SB 1686
Public Records/Parkinson’s Disease Registry
Florida Senate - 2026 CS for SB 1686 By the Committee on Health Policy; and Senator Calatayud 588-02794-26 20261686c1
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A bill to be entitled
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An act relating to public records; amending s.
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1004.4352, F.S.; providing an exemption from public
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records requirements for certain records and personal
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identifying information submitted to the Parkinson’s
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Disease Registry; providing for future legislative
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review and repeal; providing a statement of public
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necessity; providing a contingent effective date.
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Be It Enacted by the Legislature of the State of Florida:
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Section 1. Paragraph (f) is added to subsection (5) of
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section 1004.4352, Florida Statutes, as created by SB 1684, 2026
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Regular Session, to read:
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1004.4352 Parkinson’s disease research.—
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(5) PARKINSON’S DISEASE REGISTRY.—Subject to a specific
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appropriation, the department shall contract with the consortium
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to establish and maintain a Parkinson’s Disease Registry to
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ensure that the Parkinson’s disease data required to be
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submitted under paragraph (a) is maintained and available for
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use for research to advance therapies, improve patient outcomes,
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and find potential cures for the disease. The department
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contract must require the consortium to use a nationally
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recognized platform to collect data from physicians as required
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in paragraph (a).
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(f) All records and personal identifying information
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relating to persons diagnosed with or treated for Parkinson’s
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disease which is submitted to the registry under this subsection
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are confidential and exempt from s. 119.07(1) and s. 24(a), Art.
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I of the State Constitution, except that:
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1. Release may be made with the written consent of persons
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to whom the information applies.
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2. The department or the consortium may contact individuals
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for the purpose of epidemiological investigation and monitoring,
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provided information that is confidential under this subsection
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is not further disclosed.
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3. The department may enter into a data-sharing agreement
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with any other governmental agency or entity for the purpose of
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medical or scientific research, provided such governmental
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agency or entity does not further disclose information that is
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confidential under this subsection.
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This paragraph is subject to the Open Government Sunset Review
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Act in accordance with s. 119.15 and shall stand repealed on
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October 2, 2031, unless reviewed and saved from repeal through
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reenactment by the Legislature.
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Section 2. The Legislature finds that it is a public
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necessity that all records and personal identifying information
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relating to persons diagnosed with or treated for Parkinson’s
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disease which is submitted to the Parkinson’s Disease Registry
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pursuant to s. 1004.4352(5), Florida Statutes, be made
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confidential and exempt from s. 119.07(1), Florida Statutes, and
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s. 24(a), Article I of the State Constitution. The Department of
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Health and the University of South Florida’s Consortium for
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Parkinson’s Disease Research are unable to effectively implement
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the legislative purpose of the Parkinson’s Disease Registry,
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created under s. s. 1004.4352(5), Florida Statutes, without
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access to these records and information, which include personal
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medical information, the disclosure of which would violate
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federal patient privacy laws, including the Health Insurance
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Portability and Accountability Act of 1996. Therefore, the
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Legislature finds that it is a public necessity to make such
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records and information held by the department confidential and
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exempt to protect the privacy rights of persons diagnosed with
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and treated for Parkinson’s disease in this state and promote
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the effective administration of the department’s epidemiological
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research and tracking activities.
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Section 3. This act shall take effect on the same date that
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SB 1684 or similar legislation takes effect, if such legislation
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is adopted in the same legislative session or an extension
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thereof and becomes a law.