DHEC Launches Online Voluntary Patient Registry for Sickle Cell Disease
FOR IMMEDIATE RELEASE
May 25, 2023
COLUMBIA, S.C. — The South Carolina Department of Health and Environmental Control (DHEC) has partnered with Global Vision Technologies (GVT) to launch a new voluntary registry system for patients diagnosed with sickle cell disease in South Carolina.
The South Carolina General Assembly passed legislation directing DHEC to create and maintain a sickle cell disease voluntary patient registry in 2022. DHEC selected GVT's application, ClinicalPURSUIT, which will launch later this year.
"As a part of our Sickle Cell State Plan, this project will enhance our understanding of the sickle cell disease population to be able to respond with appropriate community resources, care coordination and education,” said Kimberly Seals, director of DHEC’s Bureau of Maternal and Child Health. “We look forward to collaborating with Global Vision Technologies, providers, partners and most importantly patients to move this important system forward.”
The information entered into the voluntary registry will help organizations make informed treatment decisions and support the use of existing therapies that should help improve outcomes for patients in South Carolina.
It will also allow DHEC or clinicians to enter patient data, review, analyze and act on results quickly, benchmark outcomes, and the opportunity for clinical scientific research using the registry findings. Data used for clinical research will not identify patients participating in the voluntary registry.
The system will also include a patient portal for patients to document their experiences, update their information in real-time and share their medical information with their providers. These tools will assist with reducing wait times and will allow DHEC to measure the impact of the registry on the registrants’ quality of life and quality of provider treatment.