Common to all forms of SCD is the polymerization of sickle hemoglobin (HbS), leading to abnormally stiff, often sickle-shaped red blood cells (RBCs). These abnormal RBCs damage and obstruct blood vessels, leading to the many complications of SCD, including chronic anemia, respiratory, cardiac, and renal damage, acute pain due to ischemia of bone marrow and bones (vaso-occlusive pain episodes), stroke, splenic infarction which increases susceptibility to life threatening infections, and a reduction in life expectancy.
The Indiana Sickle Cell Data Collection (IN SCDC) project will standardize the collection of SCD data which will be analyzed to inform public health interventions and population level SCD management strategies. The IN SCDC will engage with the three SCD Community Based Organizations in Indiana, healthcare providers around the state, state-funded partners like the Indiana State Department of Health (ISDH) and research institutions with the overarching goal to improve the health and well-being of Hoosiers living with SCD. The IN SCDC aims to have data collected and analyzed on an ongoing basis to provide timely, reliable, and locally relevant information on the SCD population in Indiana to help inform public health interventions, research, and policy development. The data can be routinely analyzed for public health research to address health disparities and social determinants of health as well as clinical outcomes for this population. We will implement a framework that disseminates information and analysis of data with stakeholders within the SCD community in efforts to help mobilize the community into action and allow for the data to be utilized across multiple sectors. The ISDH, Indiana’s Office of Medicaid Policy and Planning as well as other key SCD stakeholders around Indiana will have access to data to inform policy, analyze disease burden, improve decision-making, and ultimately improve quality of care for patients with SCD.
Outcomes for the IN SCDC project will include improved availability of aggregate level surveillance data for utilization in health care as well as public health policy making decisions and increased understanding of the epidemiology of SCD among patients, family members, health care providers, and policy makers.