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 2024.

Since § 32.1-73.22 through § 32.1-73.27 became effective on July 1, 2024, VDH has made progress towards establishing the registry. An internal team has been working to plan the design, development, and implementation of the registry. This included collecting information from other states who have such a registry and from relevant stakeholders, such as a local pediatric hematologist who maintains a registry of their pediatric patients in Northern Virginia, to inform the design of the registry.