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 predominantly affecting African Americans, has been recognized by various national health organizations as a condition that requires more resources for improved 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 by July 15, 2024. Additionally, LDH is tasked with developing administrative rules for the registry by August 1, 2024, and summarizing these rules in a report due by August 15, 2024. Finally, LDH is required to analyze existing data to ensure its quality by November 1, 2024, and to fully launch the Sickle Cell Disease Registry by December 24, 2024. The resolution aims to enhance the collection of patient information and improve healthcare access for individuals living with sickle cell disease in Louisiana.