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

项目总监/首席调查员(最后、第一、中间)： 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 系统性红斑狼疮(SLE)和皮肤红斑狼疮的人群前瞻性队列研究 红斑狼疮患者，反映了佐治亚州亚特兰大及其周边社区的真实世界狼疮。这个 Goal Cohort跟踪了1119名同意的参与者：913名无慢性皮肤狼疮(CCLE)的SLE或 亚急性皮肤性狼疮(SCLE)，84例SLE合并CCLE或SCLE，122例原发性CCLE或SCLE)和 包括最大数量(n=910)具有良好特征的非洲裔美国人狼疮患者 美国历史上最好的条件。 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，我们提出四个项目：项目1将继续在我们的队列中探索如何重要和 健康的社会决定因素(SDH)的创新组件与临床、社会经济和/或 影响自然病史、治疗、卫生保健途径和总体差距的生物因素 种族差异的镜头。项目2将以队列中的新发现为基础，进一步探索SDH的作用 系统性红斑狼疮(SLE)心血管疾病(CVD)的研究项目3将建立在唯一 美国以人群为基础的皮肤狼疮队列研究社会应激源对心理健康的作用 患有皮肤红斑狼疮的人。项目4将是第一个探索这些关系的研究 在心理社会应激源、表观遗传机制和两种高度流行的破坏性后果之间 在狼疮人群中：心血管疾病和抑郁症。

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.