The House Resolution, introduced 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 predominantly affecting African Americans, has been recognized as a condition that requires significant investment in resources to improve the health and quality of life for those affected. 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.

To facilitate the establishment of the registry, 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 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 resolution mandates that LDH analyze existing data to ensure its quality by November 1, 2024, with a full launch of the Sickle Cell Disease Registry expected by December 24, 2024.