This proposal seeks $250,000 under the Core Component and $250,000 under the Optional Component of the Sickle Cell Data Collection Program (CDC-RFA-DD20-2003) to maintain, build on, and further leverage Georgia’s population-based SCD surveillance system.
The Georgia Health Policy Center (GHPC) has served as the state’s hemoglobin disorders data coordinating center since the inception of this work under the CDC’s and National Heart, Lung, and Blood Institute’s Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project (2010-2012). Follow-up data analysis and health communications work continued under CDC’s Public Health Research, Epidemiology, and Surveillance in Hemoglobinopathies (PHRESH) initiative (2012-2014). We then resumed data collection, analysis and use under CDC’s Sickle Cell Data Collection (SCDC) program (2016-2020).
The proposal thus builds on Georgia’s decade-long experience of SCD data collection and collaboration with CDC’s NCBDDD and co-awardees, and our 15 years of longitudinal, population-based data for over 13,000 Georgia residents with SCD. The dataset includes demographic information, genotype, all health care system encounters with diagnoses and payers, and, for many, treatments, procedures, and prescriptions.
The goal of Georgia’s SCDC is to improve the quality of life, life expectancy, and health of individuals with sickle cell disease by developing and disseminating scientific evidence to inform policies and practices. To date, we have used SCDC data to determine incidence, prevalence, and distribution of SCD across Georgia; gaps in access to appropriate care; population-based morbidity and mortality trends; trends in health care utilization, and adherence to recommended clinical practices and guidelines including immunizations, transcranial Doppler screening, and hydroxyurea therapy.
In this work, GHPC facilitates multi-disciplinary teams of researchers, public health leaders, clinicians, community-based organizations, individuals with SCD and others. These crucial partners are equally dedicated to this work and have expressed their commitment to contribute to the current project in the attached letters of support.
Based on our past work, we are confident in our ability to achieve the outcomes sought for both components of this cooperative agreement during the three-year period of performance.