Nevada’s Sickle Cell Registry (SCR) was developed through Assembly Bill 254 (AB 254) during Nevada’s 80th Legislative Session. The SCR is designed to collect information on the number of newly diagnosed cases of Sickle cell disease and its variants (incidence) and the number of cases living in Nevada (prevalence).
Under Nevada law, “sickle cell disease and its variants” means an inherited disease caused by a mutation in a gene for hemoglobin in which red blood cells have an abnormal crescent shape that causes them to block small blood cells and die sooner than normal red blood cells and may include sickle cell disease, one or more variants or a combination thereof, as applicable.
Data sources for the registry include:
- Reports from health care facilities, providers of healthcare, and medical laboratories
- State newborn screening program
- Administrative claims data from the Division of Healthcare Financing and Policy (Medicaid)
- Hospital in-patient and emergency room discharge data
The Division of Public and Behavioral Health is in the process of regulation development that would set the reporting standards for the Sickle Cell Registry, if you would like to be included in the development process, please contact: Julia Peek at firstname.lastname@example.org.