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

项目总结 我们建议扩展加州狼疮流行病学研究(线索)，该研究已经建立了种族和 超过450名系统性红斑狼疮(SLE)患者的种族多样性队列。线索队列 是从成功的加州狼疮监测项目发起的，该项目建立了发病率和 旧金山县系统性红斑狼疮患病率。通过监控工作确定的个人被邀请到 参与纵向线索队列。这项研究目前包括：1)广泛的临床数据，包括 医生对系统性红斑狼疮疾病活动性、病史、系统性红斑狼疮表现和预后的评估 作为损害；二)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；以及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， 医疗服务的可获得性和差距、症状、残疾以及患者报告的各种结果。这 异常广泛和深入的数据收集催化了广泛的系统性红斑狼疮研究， 从SLE的临床和患者报告结果的检查到DNA甲基化和基因研究 在不同种族和民族的人群中进行转录。通过数据收集、分析和 传播，线索队列的首要目的是促进我们对流行病学的了解， 生物学、自然历史和系统性红斑狼疮的结果，特别是在不同的种族、民族和社会经济中 组。在续展期间，我们的目标是：1)继续对线索参与者进行纵向数据收集， 包括全面的患者报告数据，2)增强和维护最先进的生物显微镜 储存库并向调查人员提供对这一宝贵资源的访问，以及3)开展两个特别项目， 一项是检查耀斑期间和之后的代谢物，以深入了解SLE疾病活动的机制， 还有一项研究是研究各种活动范围内残疾的自然历史，包括耀斑如何影响 残疾轨迹。整个项目利用了杰出的机构资源，并建立在经过验证的 调查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 临床数据和生物制品。线索是独一无二的，因为很少有以人口为基础的亚洲人研究 或者患有系统性红斑狼疮的西班牙裔美国人，这两个群体受这种疾病的影响不成比例，谁 在美国人口中占有相当大的比例，而且还在不断增长。此外，我们继续致力于解决疾病问题 耀斑，这是一个研究成熟的领域，也是推进关于自然历史、结果、 系统性红斑狼疮的生物学机制及相关的健康差异。

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.