LAC 48:V.8603. Definitions

A. Unless the context or use thereof clearly indicates otherwise, the following words and terms used in this Part are defined as follows: Case—an individual confirmed to have sickle cell disease as defined by the International Classification of Diseases as sickle cell disorders, a group of genetic blood diseases characterized by abnormal, sickle-shaped red blood cells. Department—the Department of Health, the designated government agency responsible for oversight and management of the registry. Registry—the Louisiana Sickle Cell Disease Registry, also known as the Skylar-Cooper Database. This is the information system to receive and maintain confidential case-specific demographic, diagnostic, treatment, service and other health-related data. Reporting Entity—any individual or organization listed under the Louisiana Administrative Code, Title 51, Part II, Sections 103-105 that is required to report cases of sickle cell disease to the registry, or from which the department requests records related to sickle cell disease. Sickle Cell Association (also referred to as Foundation)—a non-profit, community-based organization that provides information and assistance to people diagnosed with sickle cell disease, their families, and caregivers in the state of Louisiana.