In the 2015-2016 SC General Assembly, the Sickle Cell Disease Study Committee was authorized. This committee was charged with examining existing services and resources available to children and adults living with sickle cell disease (SCD). Findings from the study committee included the need for greater public awareness about SCD, the need for more and better education about SCD processes, and the need for more funding for SCD programs to improve access to health care in both urban and rural areas of the state. One of the recommendations of the study committee included the need to develop a Sickle Cell State Plan. From this recommendation, the South Carolina Sickle Cell Disease Advocacy Team was brought together in 2017 to develop and implement the South Carolina Sickle Cell Disease State Plan in A Call to Action.
Although the SC Sickle Cell Disease State Plan addressed public awareness and education, health care provider education, access to health care, and funding, there are still gaps in the management of SCD in South Carolina due to lack of providers, lack of education for providers, need for public awareness, and limitations to accessing appropriate care, especially in hospital emergency departments.
In an effort to improve care coordination efforts between the patient, caregivers, and health care providers, the SC General Assembly passed the “Rena Grant Sickle Cell Disease Voluntary Patient Registry Act” in the 2021-2022 legislative assembly which directs SC Department of Health and Environmental Control to establish and maintain a sickle cell disease voluntary patient registry.
The South Carolina (SC) Sickle Cell Disease Registry will facilitate the collection of data about incidence and the nature of SCD in the state which can be used to educate primary, specialty, and emergency care physicians and other health care practitioners to promote the coordination of appropriate services for patients suffering from the disease. The goal of the SC Sickle Cell Disease Registry is to unite patients, caregivers, and health care providers, across South Carolina to share knowledge and experiences, and accelerate progress and advancements in patient care and treatment. For more information and a copy of the legislation, please click Here.
The registry will collect, store, and analyze medical and other information from individuals with SCD. The data will be used to determine incidence and prevalence of SCD in South Carolina, for clinicians and health care professionals to better understand SCD, to help medical providers make informed treatment decisions, to develop standards of care, and improve quality of life and patient outcomes. Development of this registry is part of a multi-dimensional approach to address the gaps in management of SCD for patients in South Carolina, and it will provide a platform for patients, providers, and caregivers to connect, unite, and share information, improving health outcomes for those living with SCD.
