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

格鲁吉亚人组织起来对抗狼疮：更好地了解狼疮健康的社会决定因素的目标

• 批准号: 10671599
• 负责人: SUNG Sam LIM
• 金额: $ 90万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-30 至 2027-09-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10671599
• 关键词: Georgians; Organized; Against; Lupus; GOAL

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.

项目概要/摘要 组装大量基于人群的系统性和/或患有系统性疾病的患者队列的能力有限 具有经过验证的诊断且具有显着代表性的皮肤狼疮，而以前代表性不足 社会人口群体一直是更好地了解真实临床负担的重大障碍 狼疮，以及与自然史、治疗和保健相关的许多未解答的问题 访问和差距。佐治亚州狼疮登记处 (GLR) 是五个已建成的疾病控制中心之一 由预防资助的基于人群的狼疮登记处旨在最大限度地减少其中的许多限制。这 格鲁吉亚抗狼疮组织 (GOAL) 队列的诞生源于 GLR 为创建一个 基于人群的前瞻性队列，包含经过验证和同意的系统性狼疮 (SLE) 和原发性皮肤病 红斑狼疮 (P-CLE) 患者，反映了亚特兰大及其周边社区的“真实世界”狼疮， 乔治亚州。 GOAL 队列跟踪了 1135 名同意的参与者：超过 1,000 名患有 SLE，超过 135 名患有 SLE P-CLE。 我们的建议将利用这个独特且强大的基于人群的狼疮队列，该队列已成功地 随着时间的推移，在以前不可能的区域收集个人和地理信息。 具体来说，我们建议提出三个项目： 项目一将继续探索重要且创新的 系统性和皮肤性红斑狼疮患者健康社会决定因素 (SDH) 的组成部分 （SLE、P-CLE）并将专门探讨 SDH 作为工作损失、终末期肾病预测因素的作用 SLE 患者的疾病和死亡率。项目 2 将探讨 Covid-19 的负担和影响 首次在美国人群中出现 SLE 和 P-CLE 患者的大流行。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果 在拥有大量非裔美国人的农村人口中。