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

项目摘要/摘要 收集系统性和/或系统性红斑狼疮患者的大规模人群队列的能力受到限制 确诊为皮肤性狼疮，且有明显的表现，而以前的表现偏低 社会人口学群体一直是更好地了解肺炎的真正临床负担的重大障碍。 狼疮，以及与自然病史、治疗和保健相关的许多悬而未决的问题 通道和差距。佐治亚州狼疮登记处(GLR)是已建成的五个疾病控制和治疗中心之一 预防资助的以人群为基础的狼疮登记旨在最大限度地减少这些限制。这个 格鲁吉亚人组织起来反对狼疮(目标)队列诞生于GLR的努力，以创建 确诊和同意的系统性红斑狼疮(SLE)和原发皮肤的基于人群的前瞻性队列 红斑狼疮(P-CLE)患者，反映亚特兰大及其周围社区的“真实世界”狼疮， 乔治亚。Goal Cohort跟踪了1135名同意的参与者：超过1000名SLE患者和超过135名SLE患者 P-CLE。 我们的建议将利用这一独特而强大的基于人群的狼疮队列，这一队列已经成功地 随着时间的推移，在以前不可能的地区收集个人和基于地理的信息。 具体来说，我们建议我们提出三个项目：项目一将继续探索具有重要意义和创新性的项目 系统性和皮肤性红斑狼疮患者社会健康决定因素(SDH)的组成 (SLE，P-CLE)，并将专门探讨SDH作为终末期肾脏工作损失的预测因子的作用 系统性红斑狼疮患者的疾病和死亡率。项目2将探讨新冠肺炎的负担和影响 美国项目3还将首次在人群水平上流行SLE和P-CLE患者 首次建立SLE和P-CLE的发病率和患病率估计并评估结果 在一个拥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.