Sickle cell disease (SCD) is a group of inherited blood disorders that affect the shape and function of red blood cells. The Centers for Disease Control (CDC) estimates that there are approximately 100,000 people in America living with SCD (CDC, 2024). The number of people living with SCD in Virginia is currently unknown. In 2024, the General Assembly enacted Chapter 437 of the 2024 Acts of Assembly. This amended the Code of Virginia to add § 32.1-73.22 through § 32.1-73.27, which directs the State Health Commissioner at the Virginia Department of Health (VDH) to establish and maintain a Statewide Sickle Cell Disease Registry. The Code requires that VDH submit a report of information obtained under these Code sections to the Governor and General Assembly by November 1 of each year. This report seeks to fulfill that mandate for 2025.

Since the time of the last report, VDH has made significant progress towards establishing the registry. VDH staff finalized the plan for the design of the registry, hired additional staff to support the registry, developed the registry platform, and tested the registry platform with key partners who will use the platform to report data. Additional details on these activities and a summary of existing data on SCD in the Commonwealth are included in this report.