Sickle Cell Data Collection Program

Sickle cell disease (SCD) is one of the most common genetic disorders in the United States. It affects around 90,000 to 100,000 Americans. SCD causes red blood cells to function in an abnormal way. Cells become rigid and curve into a sickle-like shape. The sickle shape makes it hard for the cells to pass through tiny blood vessels. This causes painful blockages that stop oxygen and nutrients in the blood from reaching organs and tissues. This can result in organ and tissue damage, stroke and other serious medical problems.

Currently, there is no population-based method to gather information about people with SCD. The Virginia Sickle Cell Data Collection Program (SCDC) partners with the CDC to gather and study data from a variety of sources. Our goal is to determine the number of people in Virginia living with SCD, where they get care and issues they face. The SCDC program will work with stakeholders on how to fill these gaps. Together, we will change policies, improve healthcare practices and find new treatments.