COLUMBIA, S.C. — A new tool is now available to South Carolinians living with sickle cell disease as the state's Department of Health and Environmental Control (DHEC) launches the South Carolina Sickle Cell Disease Registry. Individuals living with sickle cell disease (SCD) can voluntarily register their information on the site and any information entered into the registry will be protected and secured.
SCD patients and their families, their caregivers and doctors will be able to share their experiences and knowledge regarding the disease and treatments, connect patients with educational resources, inform providers, and promote the coordination of appropriate services and treatment for those with SCD. It is estimated that more than 250,000 babies are born with SCD each year and that 1 in 11 children are affected in South Carolina.
“For years, DHEC's Sickle Cell Program has assisted with coordinating care and assisting South Carolinians with sickle cell disease with medical services, supplies, equipment and medications,” said Dr. Edward Simmer, DHEC Director. “Establishing and maintaining the Sickle Cell Disease Registry is the next step in improving outcomes for those living with sickle cell disease in our state, as we are hopeful that the data collected through its implementation will lead to progress in patient care and treatment.”
The South Carolina Sickle Cell Disease Registry came about after longtime Legislative staffer Rena N Grant was diagnosed with SCD. Grant served as director of legislation for the South Carolina House of Representatives' Ways and Means Committee. After her death, state lawmakers allocated funding for the Medical University of South Carolina (MUSC) to develop a comprehensive approach to treating sickle cell disease, raising awareness about the condition, studying ways to cure it and teaching health care providers across the state about the disease and the pain it causes. In 2022, MUSC opened a new expanded sickle cell center, named the Rena N. Grant Sickle Cell Center.
“As we continue to find ways to improve sickle cell care, the South Carolina Sickle Cell Disease Registry will be a step forward to improving health care access and outcomes for South Carolinians,” said Dr. David J. Cole, MUSC President.
For those wanting to register, or if you have questions about the registry, go to scdhec.gov/sickle-cell-disease where there is more information about SCD and tutorials for using the registry.