LAC 48:V.8601. Purpose and Scope

A. The purpose of this Rule is to define the authorities and requirements for the Louisiana Sickle Cell Disease Registry, also known as the Skylar-Cooper Database. As provided in the authorizing statute, the registry will function as a single repository of public health data for people in Louisiana who have sickle cell disease. The registry seeks to quantify and characterize sickle cell disease in Louisiana and assess trends in diagnosis, treatment, and access to care. This is consistent with other public health monitoring systems that collect information about people with certain health conditions. The data derived from the Sickle Cell Disease Registry will also inform public health decision-making, policy, and other actions to support those living with sickle cell disease in the state. B. The registry was established by Act 647 of the 2022 Regular Session of the Louisiana Legislature. C. This Rule, created in response to the 2022 legislation, applies to all entities involved in the collection, reporting, storage, analysis, and dissemination of data reported to or generated from the registry.