Over the past several years, Georgia has built a robust set of sickle cell disease (SCD) surveillance data for the purpose of developing and disseminating scientific evidence to inform policies and practices that will improve the health, quality of life, and life expectancy of individuals with SCD.
This comprehensive dataset, which will soon include years 2004 through 2016, is built from newborn screening and vital records; Medicaid, Children’s Health Insurance Program, and State Health Benefit Plan administrative claims; hospital and emergency department discharge records; and limited clinical information from Georgia’s three comprehensive SCD centers. This data enables detailed statistics and longitudinal, patient-level studies of diagnosis, demographic, geographic, and health care utilization for more than 10,000 patients over a 13-year period.
“It is exciting to see the fruits of all of our partnerships’ efforts result in the ability to conduct longitudinal, patient-level studies in sickle cell disease,” says Angie Snyder, director of health policy and financing at the Georgia Health Policy Center (GHPC). “With this ability we hope to be able to improve the lives of individuals with this rare, but significant disease.”
GHPC serves as the data coordinating center for the Georgia Sickle Cell Data Collection Program and recently facilitated a stakeholder engagement process to develop a three-year dissemination and analysis plan to guide use of the SCD surveillance data. Priority research uses of the Georgia data were identified by
- Target audience (affected population, health systems, payers, policymakers, and providers)
- Nationally identified priority topic areas (aging SCD patients, patient and provider geography, Hispanic SCD populations, patients transitioning from pediatric to adult care, and health care utilization by SCD patients).
Priorities were selected for being feasible, high-leverage uses of the data, and actionable based on needed changes identified by the patient and provider communities.
SCDC Georgia lead researchers Angie Snyder and Jane Branscomb conducted a webinar, sponsored by the California Rare Disease Surveillance Program, on August 30. They spoke about how Georgia plans to use its surveillance data, including parallel efforts underway to reduce transfusion complications for patients with hemoglobin disorders like SCD and thalassemia.