Ali Bradley, interim general counsel at the Florida Department of Health, told the Joint Administrative Procedures Committee that the department contracted the Foundation for Sickle Cell Disease Research to establish and maintain the sickle cell disease and trait registry and that intake from the newborn screening program began May 31, 2024.

Bradley said the registry was fully built for newborn intake as of October 2024 and that data gathered by the newborn screening program will be migrated into the system in April 2025. She said the department developed opt‑out forms for parents and guardians and a method for individuals identified later to opt into the registry. “As of February 11… the department did file a notice of rule development creating rule 60‑4.90.001 which is the sickle cell disease and trait registry and 60‑4.90.002 which is the forms rule,” Bradley said. The notice was published February 13, and the department is in the 21‑day period for the public to request a rulemaking workshop under Chapter 120.

Committee members asked why the department implemented the registry and vendor contract before publishing proposed rules. Bradley said agency implementation focused first on procuring a vendor and building the registry; earlier statutory iterations covered only newborns and infants and the 2024 changes expanded the registry to include other individuals and amended the opt‑out requirement. The committee chair and members urged agencies to include date‑certain deadlines in legislation to help ensure timely rule adoption.