The Georgians Organized Against Lupus (GOAL) Cohort: Advancing Health Disparities

描述(由申请人提供)：在收集大量系统性和/或皮肤性狼疮患者的能力方面存在局限性，这些患者具有经过验证的诊断，并且具有来自以前代表性较低的社会人口群体的显著代表性，这一直是更好地了解狼疮的真实临床负担以及与治疗、医疗保健获取和自然病史相关的许多未回答问题的重大障碍。佐治亚州狼疮登记处(GLR)是最近完成的两个疾病控制和预防中心资助的以人群为基础的狼疮登记处之一，旨在最大限度地减少这些限制。佐治亚州组织的反对狼疮(GOAL)队列源于GLR的努力，目的是创建一个以人群为基础的、经过验证和同意的SLE患者的预期队列，反映佐治亚州亚特兰大及其周围社区的“真实世界”狼疮。自成立以来，已有802名狼疮患者在第一年(2011-2012年)同意并完成登记，截至第二年底(2013年)，总共有929名SLE患者。它还处于独特的地位，可以创建美国最大的以人群为基础的皮肤狼疮队列。我们的建议完全符合FOA的所有特殊资格要求，并将利用既定的目标队列前瞻性地收集重要信息和生物材料，作为假设生成和合格研究小组调查的储存库。随着时间的推移，这一强大而独特的患者集合也将提供一个探索以前不可能实现的重要领域的机会。我们的建议将利用已建立的基于人群的狼疮队列，前瞻性地收集重要信息和生物材料，作为假设生成和合格研究小组调查的储存库。随着时间的推移，这一强大而独特的患者集合也将提供一个探索以前不可能实现的重要领域的机会。具体地说，我们提出了两个项目，将探索健康的社会决定因素的重要和创新组成部分如何与临床、社会经济和/或生物因素相互作用，以影响系统性红斑狼疮的心血管疾病结局和皮肤红斑狼疮的生活质量，作为理解和解决持续存在的显著种族健康差异的一种方式。第三个项目将使用创新的实验室平台来测试我们更好地预测那些处于疾病爆发最高风险的人的能力，潜在地进一步减轻疾病负担的差异。PHS 398/2590(06/09版)页面续格式页面

DESCRIPTION (provided by applicant): 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 socio-demographic groups have been a significant barrier to better understanding the true clinical burden of lupus, as well as the many unanswered questions related to treatment, health care access, and natural history. The Georgia Lupus Registry (GLR) is one of two recently 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 SLE patients, reflecting "real world" lupus in the community in and around Atlanta, Georgia. Since its inception, 802 lupus patients have been consented and finished enrollment in the first year (2011-2012) and a total of 929 SLE patients by the end of the second year (2013). It is also uniquely positioned to create the largest population-based cohort of cutaneous lupus in the US. Our proposal is completely responsive to all of the special eligibility requirements of thi FOA and will utilize the established GOAL Cohort to prospectively collect important information and biological materials to serve as a repository for hypothesis generation and investigation by qualified research groups. This powerful and unique collection of patients followed over time will also provide an opportunity to explore important areas that were not possible before. Our proposal will utilize an established population-based lupus cohort to prospectively collect important information and biological materials to serve as a repository for hypothesis generation and investigation by qualified research groups. This powerful and unique collection of patients followed over time will also provide an opportunity to explore important areas that were not possible before. Specifically, we propose 2 projects that will explore how important and innovative components of social determinants of health interact with clinical, socioeconomic, and/or biologic factors to influence cardiovascular disease outcomes in systemic lupus erythematosus and quality of life in cutaneous lupus erythematosus as a way of understanding and addressing the significant racial health disparities that continue to exist. A third project wil use innovative laboratory platforms to test our ability to better predict those who are at highest risk of disease flares, potentially further mitigating disparities in the burden of disease. PHS 398/2590 (Rev. 06/09) Page Continuation Format Page