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

项目总结/摘要 收集具有全身性和/或全身性疾病的患者的大型人群队列的能力有限 经验证诊断的皮肤狼疮，从以前代表性不足的病例中有显著代表性 社会人口统计学群体是更好地理解真正的临床负担的一个重要障碍， 狼疮，以及与自然史，治疗和卫生保健有关的许多未回答的问题 机会和差距。格鲁吉亚狼疮登记处（GLR）是五个完整的疾病控制中心之一， 预防基金资助的基于人群的狼疮登记处旨在最大限度地减少这些限制。的 格鲁吉亚人有组织的抗狼疮（目标）队列诞生于GLR的努力，以创建一个 一项基于人群的前瞻性队列研究，研究对象为经验证和同意的系统性狼疮（SLE）和原发性皮肤病患者。 红斑狼疮（P-CLE）患者，反映了亚特兰大及其周围社区的“真实的世界”狼疮， 格鲁吉亚。GOAL队列随访了1135名知情同意的参与者：超过1,000名SLE患者和超过135名SLE患者。 P-CLE 我们的建议将利用这个独特而强大的以人群为基础的狼疮队列，该队列已经成功地 随着时间的推移，在以前不可能的领域收集个人和地理信息。 具体来说，我们建议我们提出三个项目：项目1将继续探索重要的和创新的 系统性红斑狼疮和皮肤红斑狼疮患者的健康社会决定因素（SDH） (SLE，P-CLE），并将专门探讨SDH作为做功损失、终末期肾功能衰竭、 疾病和死亡率。项目2将探讨新冠肺炎的负担和影响 在美国，SLE和P-CLE患者首次在人群水平上大流行。项目3还将 首次建立SLE和P-CLE的发病率和患病率估计值，并评估结局 在一个有大量非裔美国人的农村人口中。

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.