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

格鲁吉亚人组织抗狼疮 (GOAL) 队列：扩大健康差距

• 批准号: 8829632
• 负责人: Cristina Marta Drenkard
• 金额: $ 99.22万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8829632
• 关键词: Georgians; Organized; Against; Lupus; GOAL

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

描述（由申请人提供）：在收集大量基于人群的系统性和/或皮肤性狼疮患者队列的能力方面存在局限性，这些患者具有经验证的诊断，并且具有来自先前代表性不足的社会人口统计学群体的显著代表性，这是更好地理解狼疮的真实临床负担以及与治疗、医疗保健获得和自然史相关的许多未回答的问题的重大障碍。格鲁吉亚狼疮登记处（GLR）是最近完成的两个疾病控制和预防中心资助的基于人群的狼疮登记处之一，旨在尽量减少这些限制。格鲁吉亚人组织抗狼疮（GOAL）队列是在GLR的努力下诞生的，旨在创建一个基于人群的经验证和同意的SLE患者前瞻性队列，反映格鲁吉亚亚特兰大及其周边社区的“真实的世界”狼疮。自成立以来，第一年（2011-2012年）已有802名狼疮患者获得同意并完成入组，到第二年（2013年）年底，共有929名狼疮患者。它还具有独特的优势，可以在美国创建最大的基于人群的皮肤狼疮队列。我们的提案完全符合本FOA的所有特殊资格要求，并将利用已建立的GOAL队列前瞻性收集重要信息和生物材料，作为合格研究小组进行假设生成和调查的储存库。随着时间的推移，这种强大而独特的患者集合也将为探索以前不可能的重要领域提供机会。我们的建议将利用一个已建立的基于人群的狼疮队列前瞻性地收集重要的信息和生物材料，作为合格的研究小组进行假设生成和调查的知识库。随着时间的推移，这种强大而独特的患者集合也将为探索以前不可能的重要领域提供机会。具体而言，我们提出了2个项目，将探讨健康的社会决定因素的重要和创新成分如何与临床，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，作为理解和解决继续存在的重大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疾病爆发风险最高的人的能力，这可能进一步减轻疾病负担的差异。PHS 398/2590（Rev.06/09）