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

描述（由申请人提供）：拟议的加州狼疮纵向流行病学研究（线索）队列将来自成功的加州狼疮监测项目（CLSP），这是疾病控制和预防中心（CDC）资助的基于人群的登记（n=890）。线索的目的是：(1)招募和跟踪在CLSP中确定的个体，建立一个以人群为基础的纵向队列，其中非裔美国人、亚裔、西班牙裔和白种人个体的独特平衡；(2)创建最先进的临床和患者报告数据库，包括进一步定义和理解狼疮流行病学和结果所需的信息；(3)建立最先进的狼疮生物标本库，包括clue队列中个体的血清和DNA；(4)开展高影响力的研究调查，以促进对狼疮种族/民族和社会经济差异的理解；(5)支持在加州和全国范围内协作使用clue数据和生物标本库进行研究调查，并与社区和组织伙伴合作，确保研究结果影响公共卫生。将进行创新性研究调查，以检查表观遗传谱随时间的变化，并确定表观遗传因素是否导致狼疮结局的种族差异；调查狼疮患者报告的新结果（PROs）和这些结果的种族/民族差异；并使用新的质量措施来了解和量化美国医疗保健系统中不同种族/民族群体中狼疮肾炎的评估和治疗情况。从分子水平到卫生系统水平的这一系列项目说明了这一应用程序的一个独特特点。其他新颖的方面是患者群体的多样性；研究者在开展和维护患者队列研究、狼疮临床护理、狼疮临床、遗传学和PRO研究方面的丰富经验；这个

DESCRIPTION (provided by applicant): The proposed longitudinal California Lupus Epidemiology Study (CLUES) cohort will derive from the successful California Lupus Surveillance Project (CLSP), a Centers for Disease Control and Prevention (CDC)-funded population-based registry (n=890). Aims of CLUES are to: (1) Recruit and follow individuals identified in the CLSP to establish a population-based, longitudinal cohort with a unique balance of African American, Asian, Hispanic, and Caucasian individuals; (2) Create a state-of-the-art clinical and patient-reported data repository that includes information needed to further define and understand the epidemiology and outcomes of lupus; (3) Establish a state-of-the-art lupus biospecimen repository that includes serum and DNA from individuals in the CLUES cohort; (4) Perform high-impact research investigations to advance understanding of racial/ethnic and socioeconomic disparities in lupus; and (5) Support collaborative use of the CLUES data and biospecimen repositories for research investigations both in California and nationally, and work with community and organizational partners to ensure that study findings impact public health. Innovative research investigations will be undertaken to examine changes in epigenetic profiles over time and determine whether epigenetic factors contribute to ethnic differences in lupus outcomes; investigate novel patient-reported outcomes (PROs) in lupus and racial/ethnic differences in those PROs; and use new quality measures to understand and quantify how lupus nephritis is evaluated and treated in different racial/ethnic groups in the U.S. health care system. This range of projects, from the molecular to the health systems level, illustrates one of the unique features of this application. Other novel aspects are the diversity of the patient population; the depth of experience of the investigators with development and maintenance of patient cohort studies, clinical care of lupus, and lupus clinical, genetics, and PRO research; the diversity of data to be collected both to address specific investigations and to establish a resource for other investigators and future collaborations; and plans to collect biospecimens from the carefully characterized and diverse lupus cohort. We will recruit individuals from the CLSP cohort to participate in systematic annual telephone surveys that include information on disease status, PROs, and self-reported health utilization. A group of 400 patients, 100 from each of four racial/ethnic groups (African American, Asian, Hispanic, and Caucasian), will also undergo more intensive study. This group will have two research clinic visits that will include detailed clinical examinations by leading lupus physicians, collection of biologic specimens, completion of PRO measures, and collection of medical records. The proposed project leverages outstanding institutional resources and builds on the proven track-record of the investigators in (1) building successful administrative and management infrastructures, including a strong Advisory Committee, (2) developing and maintaining longitudinal cohort studies, and (3) creating effective systems for sharing clinical data and biospecimen resources.