House Resolution No. by Representative Phelps directs the Louisiana Department of Health (LDH) to establish the Sickle Cell Disease Registry by meeting specific benchmarks. Sickle cell disease, a hereditary blood disorder that predominantly affects African Americans, has been recognized by various national health organizations as a condition requiring significant investment in resources to improve patient care. Despite previous legislative efforts, the number of diagnosed patients in Louisiana remains unknown, and the registry, created by Act No. 647 in 2022, has yet to be enforced. The resolution emphasizes the urgency of launching the registry, especially in light of recent advancements in treatment options, such as CRISPR gene therapy.

The resolution outlines a timeline for LDH to execute a memorandum of understanding with healthcare providers and sickle cell associations by July 1, 2024, and to report on this agreement to relevant legislative committees by July 15, 2024. Additionally, LDH is tasked with developing administrative rules for the registry by August 1, 2024, and reporting on these rules by August 15, 2024. The full launch of the Sickle Cell Disease Registry is mandated to occur by December 24, 2024, with the goal of improving data collection and patient support for individuals living with sickle cell disease in Louisiana.