Rule: 64-9.001

Rule Title: Procedures for Opting Out of and Opting Into the Sickle Cell Registry

Department:

DEPARTMENT OF HEALTH

Division:

Departmental

Chapter:

SICKLE CELL REGISTRY

Latest version of the final adopted rule presented in Florida Administrative Code (FAC):

Effective Date:

5/6/2026

History Notes:

Rulemaking Authority 383.147 FS. Law Implemented 383.147 FS. History–New 5-6-26.

References in this version:

Ref-18994 DH8006-CMS-02-2026 Florida Sickle Cell Registry Infant Opt-Out Form

Ref-18995 DH8001-OMH-11/2025, Florida Sickle Cell Registry Opt-In Form

Ref-18996 DH8000-OMH-11/2025, Florida Sickle Cell Registry Opt-Out Form

History of this Rule since Jan. 6, 2006

Notice /

Adopted

Section

Description

Publish

Date

Final

64-9.001

Procedures for Opting Out of and Opting Into the Sickle Cell Registry

Effective:

05/06/2026

Change

64-9.001

Procedures for Opting Out of and Opting Into the Sickle Cell Registry

3/2/2026

Vol. 52/41

Proposed

64-9.001

To implement a sickle cell registry for individuals that carry the sickle cell disease or trait by providing a process and forms for individuals and for parents or guardians of newborns and infants to opt out of the registry ....

12/2/2025

Vol. 51/232

Development

64-9.001

......

The purpose of this rulemaking is to establish a sickle cell registry for individuals that carry the sickle cell disease or trait, to provide reporting requirements, and to provide forms for individuals and parents or guardians ....

2/13/2025

Vol. 51/30