LAC 48:V.8609. Reporting Entities

A. State Health Information Systems 1. State health information systems that collect or maintain information related to the diagnosis, treatment, care, and outcomes of cases of sickle cell disease shall provide routine standardized data transfers to the registry. The data will allow for the identification of cases, identification of services accessed, health outcomes, and vital events. 2. At a minimum, reporting shall be required for the sections of the Department of Health responsible for: a. testing and follow-up of infants tested as a part of the newborn screening system; b. stewardship of hospital inpatient discharge data reported to the department; c. stewardship of admissions, discharge, and transfer data reported to the department; d. management of claims and related information for Louisiana Medicaid; e. vital records birth and death data for the state; and f. management of Louisiana immunization information System. B. Healthcare Provider Reporting 1. Sickle cell disease is a reportable condition. Healthcare providers listed under LAC 51:II.103-105 shall comply with reporting requirements for Class D reportable conditions. 2. Mandatory reporting requirements for positive newborn screening test results indicating sickle cell disease are detailed in R.S. 40:1081.2 and LAC 48:V.6303. Additionally, laboratories, whether public, private, hospital or other, within or outside of the state shall report to the registry the results of all non-newborn screening tests that are diagnostic or confirmatory for sickle cell disease and its variants for individuals residing in Louisiana. Laboratories or any applicable healthcare facilities shall not defer their public health reporting responsibilities to any other authorities within the institutions they serve. C. Other Reporting for Special Studies 1. Inpatient and outpatient healthcare facilities, systems, laboratories, other healthcare institutions, health insurance carriers, and social service agencies, including but not limited to sickle cell foundations and associations that provide supportive services for individuals with sickle cell disease may be requested to report to the registry. The requested reporting may be done periodically for case ascertainment and analytic activities, as it relates to healthcare access, quality, and assessment of health outcomes. The reporting also assists in the quality assessment of registry data.