The Florida Senate

The bill creates a public record exemption for patient identifying information held in the Parkinson’s disease registry, except that such information may be disclosed to the following:

           The Parkinson’s Disease Research Board.

           A private entity that the board has contracted with to establish and maintain the registry if such entity agrees to:

   Submit a research plan to the board which specifies the exact nature of the information requested and the intended use of the information;

   Maintain the confidentiality of the records or information if personal identifying information is made available to the entity;

   Destroy any confidential records or information obtained after the research is concluded; and

   Not directly or indirectly contact, for any purpose, any patient.

The bill provides legislative findings that the public records exemption it creates is a public necessity. The bill specifies that its provisions are subject to the Open Government Sunset Review Act, and that such provisions shall stand repealed on October 2, 2031, unless reviewed and saved from repeal through reenactment by the Legislature.

If approved by the Governor, or allowed to become law without the Governor's signature, these provisions take effect on the same date that HB 1443 or similar legislation takes effect.

Vote: Senate 32-1; House 116-0