Georgians Organized Against Lupus: The GOAL of Better Understanding Social Determinants of Health in Lupus

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PROJECT SUMMARY/ABSTRACT Limitations in the ability to assemble large population-based cohorts of patients with systemic and/or cutaneous lupus with validated diagnoses and with significant representation from previously underrepresented sociodemographic groups have been a significant barrier to better understanding the true clinical burden of lupus, as well as the many unanswered questions related to the natural history, treatment, and health care access and gaps. The Georgia Lupus Registry (GLR) is one of five completed Centers for Disease Control and Prevention–funded population-based lupus registries designed to minimize many of these limitations. The Georgians Organized Against Lupus (GOAL) Cohort was born out of the efforts of the GLR to create a population-based prospective cohort of validated and consented systemic lupus (SLE) and primary cutaneous lupus erythematosus (P-CLE) patients, reflecting “real world” lupus in the community in and around Atlanta, Georgia. The GOAL Cohort has followed 1135 consented participants: over 1,000 with SLE and over 135 with P-CLE. Our proposal will utilize this unique and powerful population-based lupus cohort that has been successfully followed over time to collect individual and geographic-based information in areas not previously possible. Specifically, we propose we propose three projects: Project 1 will continue to explore important and innovative components of social determinants of health (SDH) in those with systemic and cutaneous lupus erythematosus (SLE, P-CLE) and will specifically explore the role of SDH as predictors of work loss, end stage kidney disease, and mortality in people with SLE. Project 2 will explore the burden and impact of the Covid-19 pandemic in people with SLE and P-CLE on a population level for the first time in the U.S. Project 3 will, also for the first time, establish incidence and prevalence rate estimates and evaluate outcomes in SLE and P-CLE in a rural population with large numbers of African Americans.