HEALTH: Harnessing Epidemiology to Advance Lupus Treatment and Health

摘要 狼疮仍然是年轻女性死亡的主要原因，种族/少数民族患者的情况更糟 长期结果，包括进展到终末期肾病和总死亡率，以及更差 疾病活动和损害应计的中间结果。此外，狼疮的表现还会影响身体 功能、疲劳、疼痛和其他患者报告的结果，可能会导致维护方面的挑战 日常活动和功能，与更好的生活质量、生产力和生存息息相关。最后，一个 系统性红斑狼疮治疗的主要挑战是延迟发现早期肾脏疾病，这最终导致 给患者和卫生系统都带来了更大的负担。响应CDC NOFO RFA-DP-22-002， A部分，“狼疮流行病学：基于人群的队列纵向研究”，本提案 利用我们成熟的、纵向的、种族/种族和社会经济多样性，以及 狼疮患者的表型特征良好的队列。这项提案的总体目标包括 通过评估疾病的严重程度、发病率和多种发病率来阐明SLE的长期自然病史； 评估与种族/民族、年龄和社会经济地位相关的疾病经历的差异； 收集新的生物样品以潜在地区分疼痛/疲劳综合征的根源；并评估 识别高危患者早期肾脏疾病的新策略。纽约大学狼疮患者队列是一个“活着的人” 有900名患者参加的生物信息库，四分之三的患者每年至少跟踪两次，不同的 背景(50%的少数族裔；30%的西班牙裔)和社会经济地位(31%的公立医院患者) 随着时间的推移提供样品。数据包括人口统计数据、一段时间内建立的分类标准、 药物，常规代谢和血液学参数，实验室尿液分析，自身抗体 使用经过验证的仪器，患者报告的简档、疾病活动波动和器官损害累计值 成果、社会经济地位和地位的措施以及物质、行为、心理社会、健康 系统，和健康结果。我们建议将我们的纵向队列与电子医疗联系起来 记录和全州范围内的所有付款人索赔数据，包括共病数据、新的细胞因子谱和转录 模块，并实施一种新的战略来识别早期肾脏疾病。我们的多学科团队将 解决三个具体目标：1)量化狼疮患者的多发病和主要医疗用途 提高对狼疮和非狼疮合并症的认识，包括社会人口学差异 因素；2)测量狼疮对生活质量的负担，并通过以下分析评估差异 社会人口因素、行为和心理社会因素以及遗传信息；以及3)发展和 评估创新的、技术驱动的、基于家庭的蛋白尿检测，适用于肾炎风险较高的患者。 总体而言，这项研究有望显著提高对狼疮流行病学的理解， 包括与狼疮相关的发病率和生活质量，以及管理狼疮患者的干预目标。

ABSTRACT Lupus remains a leading cause of death in young women, with racial/ethnic minority patients having worse long-term outcomes, including progression to end stage renal disease and overall mortality, and poorer intermediate outcomes of disease activity and damage accrual. Further, manifestations of lupus affect physical function, fatigue, pain, and other patient-reported outcomes, potentially leading to challenges with maintaining everyday activities and function, which are linked to better quality of life, productivity, and survival. Finally, a major challenge in SLE management is delayed identification of early kidney disease, which ultimately leads to a greater burden on both patients and the health system. In response to the CDC NOFO RFA-DP-22-002, Component A, “Epidemiology of Lupus: Longitudinal Studies in Population-Based Cohorts,” this proposal leverages our well-established, longitudinal, ethnically/racially and socioeconomically diverse, and phenotypically well-characterized cohort of patients with lupus. This proposal’s overarching goals include clarifying the long-term natural history of SLE by evaluating disease severity, morbidity, and multi-morbidity; assessing disparities in illness experience associated with race/ethnicity, age, and socioeconomic status; collecting novel biospecimens to potentially differentiate roots of pain/fatigue syndromes; and evaluating a novel strategy to identify early kidney disease in high-risk patients. The NYU Lupus Cohort is a “living” biorepository with >900 patients enrolled, three-quarters followed at least twice annually, with diverse backgrounds (50% minority race; 30% Hispanic) and socioeconomic status (31% public hospital patients) who provide samples over time. Data include demographics, established classification criteria over time, medications, routine metabolic and hematologic parameters, laboratory-based urine analysis, autoantibody profiles, disease activity fluctuations and organ damage accrual using validated instruments, patient-reported outcomes, and measures for socioeconomic status and position, and material, behavioral, psychosocial, health system, and health outcomes. We propose to extend our longitudinal Cohort with linkage to electronic health records and state-wide, all-payer claims data for comorbidity data, new cytokine profiles and transcriptomic modules, and implementating a novel strategy to identify early kidney disease. Our multidisciplinary team will address three Specific Aims: 1) Quantify multimorbidity and major healthcare use in patients with lupus to improve understanding of lupus and non-lupus comorbidities, including disparities by sociodemographic factors; 2) Measure the burden of lupus on quality of life, with analyses to assess disparities by sociodemographic factors, behavioral and psychosocial factors, and genetic information; and 3) Develop and evaluate innovative, technology-driven home-based proteinuria testing for patients at elevated risk of nephritis. Overall, this study is anticipated to provide a significantly improved understanding of lupus epidemiology, including lupus-related morbidity and quality of life, and targets for interventions to manage patients with lupus.