Racial/ethnic and socioeconomic disparities in biologic and clinical SLE outcomes

生物学和临床 SLE 结果的种族/民族和社会经济差异

• 批准号: 10551664
• 负责人: Maria Dall'Era
• 金额: $ 88万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 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/10551664
• 关键词: Racial; ethnic; socioeconomic; disparities; biologic

PROJECT SUMMARY We propose to extend the California Lupus Epidemiology Study (CLUES), which has established a racially and ethnically diverse cohort of over 450 individuals with systemic lupus erythematosus (SLE). The CLUES cohort was launched from the successful California Lupus Surveillance Project, which established the incidence and prevalence of SLE in San Francisco County. Individuals identified through the surveillance effort were invited to participate in the longitudinal CLUES cohort. The study currently includes i) extensive clinical data, including physician-assessed measures of SLE disease activity, medical history, SLE manifestations, and outcomes such as damage; ii) biologic specimens and data, including genetic, epigenetic, gene expression and environmental exposure information; and iii) data from structured interviews with participants covering sociodemographics, healthcare access and gaps, symptoms, disability, and a wide variety of patient-reported outcomes. This exceptionally broad and deep data collection has catalyzed a wide spectrum of SLE research studies, ranging from the examination of clinical and patient-reported outcomes in SLE to studies of DNA methylation and gene transcription across racially and ethnically diverse populations. Through data collection, analyses and dissemination, the overarching aim of the CLUES cohort is to advance our understanding of the epidemiology, biology, natural history, and outcomes of SLE, particularly among diverse racial, ethnic and socioeconomic groups. In the renewal period, our aims are 1) to continue longitudinal data collection on CLUES participants, including comprehensive patient-reported data, 2) to enhance and maintain a state-of-the-art biospecimen repository and provide access to this valuable resource to investigators, and 3) to conduct two special projects, one examining the metabolome during and after flares to gain insight into mechanisms of SLE disease activity, and one examining the natural history of disability across the activity spectrum, including how flares may affect disability trajectories. The overall project leverages outstanding institutional resources and builds on the proven track-record of the investigators in building a successful administrative and management infrastructure for CLUES, developing and maintaining longitudinal cohort studies, and creating effective systems for sharing clinical data and biospecimens. CLUES is unique because there are very few population-based studies of Asians or Hispanic-Americans with SLE, two groups that are disproportionately affected by the disease and who comprise a significant and growing proportion of the U.S. population. In addition, we continue to address disease flares, an area that is ripe for research and central to advancing knowledge about the natural history, outcomes, biologic mechanisms of SLE and related health disparities.

项目概要 我们建议扩大加州狼疮流行病学研究 (CLUES)，该研究已建立了种族和 超过 450 名系统性红斑狼疮 (SLE) 患者组成的不同种族队列。线索队列 是从成功的加州狼疮监测项目发起的，该项目确定了发病率和 旧金山县 SLE 患病率。通过监视工作确定的个人被邀请 参与纵向 CLUES 队列。该研究目前包括 i) 广泛的临床数据，包括 医生评估的 SLE 疾病活动度、病史、SLE 表现和结局等指标 作为损坏； ii) 生物标本和数据，包括遗传、表观遗传、基因表达和环境 暴露信息； iii) 来自对参与者的结构化访谈的数据，涵盖社会人口统计数据， 医疗保健的获取和差距、症状、残疾以及患者报告的各种结果。这 极其广泛和深入的数据收集促进了广泛的 SLE 研究，范围广泛 从 SLE 临床和患者报告结果的检查到 DNA 甲基化和基因的研究 跨种族和民族不同人群的转录。通过数据收集、分析和 传播，CLUES 队列的首要目标是增进我们对流行病学的理解， 生物学、自然史和 SLE 的结果，特别是在不同种族、民族和社会经济群体中 组。在更新期间，我们的目标是 1) 继续收集 CLUES 参与者的纵向数据， 包括全面的患者报告数据，2) 增强和维持最先进的生物样本 存储库并向研究人员提供对这一宝贵资源的访问，以及 3) 开展两个特殊项目， 一项检查发作期间和发作后的代谢组，以深入了解 SLE 疾病活动的机制， 一项研究了整个活动范围内残疾的自然史，包括耀斑如何影响 残疾轨迹。整个项目利用了优秀的机构资源并建立在经过验证的基础上 调查人员在建立成功的行政和管理基础设施方面的记录 线索，开发和维护纵向队列研究，并创建有效的共享系统 临床数据和生物样本。 CLUES 是独一无二的，因为针对亚洲人的基于人群的研究很少 或患有系统性红斑狼疮的西班牙裔美国人，这两个群体受该疾病的影响尤为严重，并且 占美国人口的很大一部分并且还在不断增长。此外，我们继续应对疾病 耀斑，一个研究时机已经成熟的领域，对于推进有关自然历史、结果、 SLE 的生物学机制和相关的健康差异。