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，少数种族/民族患者的情况更糟。 长期结局，包括进展至终末期肾病和总体死亡率， 疾病活动和损害累积的中间结果。此外，狼疮的表现影响身体 功能、疲劳、疼痛和其他患者报告的结局，可能导致维持 日常活动和功能，这与更好的生活质量，生产力和生存有关。最后 SLE管理的主要挑战是早期肾脏疾病的延迟识别，这最终导致 给病人和卫生系统带来更大的负担。作为对CDC NOFO RFA-DP-22-002的回应， 组成部分A，“狼疮流行病学：基于人群队列的纵向研究”，该提案 利用我们完善的、纵向的、民族/种族和社会经济多样性， 表型特征良好的狼疮患者队列。该提案的总体目标包括 通过评估疾病严重程度、发病率和多发病率，阐明SLE的长期自然史; 评估与种族/民族、年龄和社会经济地位相关的疾病经历差异; 收集新的生物样本以潜在地区分疼痛/疲劳综合征的根源;以及 新的策略，以确定早期肾脏疾病的高危患者。纽约大学狼疮队列是一个“生活” 生物储存库有>900名患者入组，四分之三的患者每年至少随访两次， 背景（50%的少数民族; 30%的西班牙裔）和社会经济地位（31%的公立医院患者）， 随时间提供样本。数据包括人口统计学，随着时间的推移建立的分类标准， 药物、常规代谢和血液学参数、基于实验室的尿液分析、自身抗体 使用经验证的工具，患者报告的特征、疾病活动波动和器官损伤累积 结果，以及社会经济地位和位置，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健康联系起来 记录和全州范围内的所有付款人索赔数据，用于合并症数据，新的细胞因子谱和转录组学 模块，并实施一种新的策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）量化狼疮患者的多药治疗和主要医疗保健使用， 提高对狼疮和非狼疮合并症的认识，包括社会人口统计学差异 2）测量狼疮对生活质量的负担，通过分析评估差异， 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，技术驱动的家庭为基础的蛋白尿检测的患者在肾炎的风险增加。 总的来说，这项研究预计将提供一个显着改善了解狼疮流行病学， 包括狼疮相关的发病率和生活质量，以及管理狼疮患者的干预措施的目标。

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.