Sickle cell disease (SCD) is a term used to describe a group of inherited blood disorders that affects the shape and function of red blood cells. SCD causes red blood cells to function abnormally, becoming rigid and curving into a sickle-like shape. The sickle shape makes it difficult for the cells to pass through tiny blood vessels, resulting in painful blockages that prevent vital oxygen and nutrients in the blood from reaching organs and tissues. These blockages can result in tissue damage, severe recurrent pain, strokes, organ damage and other serious medical complications.
SCD primarily affects those of African descent, but also is found in people who trace their ancestry to South and Central America, the Middle East, India, Italy, Greece and Turkey.
There is no universal cure for SCD, but new treatments and preventive therapies have improved the life expectancy and quality of life for people with the disorder.
The Virginia Department of Health funds three initiatives related to SCD, sickle cell trait (SCT), and other hemoglobinopathies: Virginia Sickle Cell Awareness Program, the Pediatric Comprehensive Sickle Cell Clinic Network, and the Adult Comprehensive Sickle Cell Clinic Network.
Statewide Sickle Cell Disease Registry Statement
The Virginia Department of Health has started collecting patient information for the Sickle Cell Registry. This registry was created in response to a law passed in July 2024.
Data will be collected in two phases:
Phase 1 (now underway): VDH-partnered Pediatric and Adult Comprehensive Sickle Cell Centers are currently entering patient information into the registry.
Phase 2 (starting in December 2025): Hospitals, clinics, laboratories, and physicians across Virginia will begin entering information into the registry.
VDH encourages your participation. The registry will help VDH better understand the needs of people living with SCD in Virginia. The data will help VDH and healthcare providers improve care and health outcomes. All patient data will be kept confidential and protected by law.
Patients can choose to opt-out of the registry here.