The Georgians Organized Against Lupus (GOAL) Cohort: Addressing Health Disparities in Lupus through Social Determinants of Health

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Program Director/Principal Investigator (Last, First, Middle): 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 cutaneous lupus erythematosus patients, reflecting “real world” lupus in the community in and around Atlanta, Georgia. The GOAL Cohort has followed 1119 consented participants: 913 SLE without chronic cutaneous lupus (CCLE) or subacute cutaneous lupus (SCLE), 84 SLE with CCLE or SCLE, and 122 with Primary CCLE or SCLE) and includes the largest number (n=910) of well-characterized African American lupus patients with these conditions ever assembled in the U.S. 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 four projects: Project 1 will continue to explore in our cohort how important and innovative components of social determinants of health (SDH) interact with clinical, socioeconomic, and/or biologic factors to influence natural history, treatment, health care access and gaps through the overarching lens of racial disparities. Project 2 will build on new findings from the cohort to further explore the role of SDH on cardiovascular disease (CVD) in systemic lupus erythematosus (SLE). Project 3 will build on the only population-based cutaneous lupus cohort in the US to explore the role of social stressors on the mental health of people with cutaneous lupus erythematosus. Project 4 will be the first study to explore the relationships between psychosocial stressors, epigenetic mechanisms, and two highly prevalent and devastating outcomes in the lupus population: CVD and depression.