The South Carolina Department of Health and Environmental Control (DHEC) is pleased to announce the launch of the South Carolina Sickle Cell Disease Registry. The implementation of the voluntary registry is a major step towards improving the quality of life and health outcomes for individuals living with Sickle Cell Disease (SCD).
Current data surrounding SCD in South Carolina is limited, including number of people with SCD, availability of resources, and the impact of the disease on patients and their families. South Carolina legislators and leaders recognized these challenges, and subsequently passed the Rena N. Grant Sickle Cell Disease Voluntary Patient Registry Act, signed into law in May 2022.
The goals of the South Carolina Sickle Cell Disease Registry are to assist in coordinating and improving access to care and to improve the services and resources currently available across the state for individuals living with SCD.
“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.”
Information obtained through the registry would be used to collect data on the frequency and nature of sickle cell disease across the state, which will be used to educate providers and promote the coordination of appropriate services and treatment for individuals with SCD, thus improving quality of life and patient outcomes for those living with SCD. The registry can also be used to connect SCD patients with educational resources.
“The launch of the Sickle Cell Disease Registry in South Carolina will undoubtedly improve the quality of life for those in our state living with this challenging disease,” said Rep. Murrell Smith, Speaker of the South Carolina House of Representatives. “I am incredibly proud of the legislation developed by the House, inspired by our beloved, long-time staff member Rena Grant, that made this registry a reality. I know this registry will help countless people, as Rena did through her public service, and I could not think of a better way to honor her than by empowering SCD patients and their families.”
Grant served as director of legislation for the South Carolina House of Representatives’ Ways and Means Committee. After her death, state lawmakers also 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.
Participation in the South Carolina Sickle Cell Disease Registry is voluntary, and any information entered into the registry will be protected and secured. Training on how to use the registry is available for health care providers and patients on both the registry’s website and DHEC’s website in video and PDF formats.
Individuals living with sickle cell disease, or their caregivers, can request to register now, here.
Those with questions about the registration process or about participation in the registry can contact the registry team at [email protected].