Lupus Midwest Network (LUMEN)

项目摘要 关于狼疮的知识偏向于疾病谱的严重端，因为困难 聚集人群中的狼疮患者。迫切需要扩大基本的流行病学 在四个内容区域中理解皮肤和系统性狼疮（即，自然史、治疗、健康 护理机会和差距）由疾病控制和预防中心确定。我们的项目 利用罗切斯特流行病学项目（REP）的独特研究基础设施来满足这些需求。 REP包含明尼苏达州和威斯康星州27个县的居民的纵向数据。 嵌套在REP的医疗记录链接系统中，我们已经确定了基于人口的队列， 皮肤型红斑狼疮583例，系统性红斑狼疮434例 (SLE)按性别、年龄、人种/种族和居住县与基于人群的非SLE参考对象匹配 或CLE。这些群组组成狼疮中西部网络（LUMEN）。通过REP的基础设施， LUMEN遵循个人，无论保险状况如何，并涵盖全方位的护理，从 从初级保健诊所到三级专科保健，并维护诊断和程序的电子索引 从这些记录中，包括所有住院和门诊就诊，实验室测量和药物 处方数据。这些资源加上一个研究人员和临床医生团队， 进行基于人口的研究的经验为我们提供了一个机会， 的自然史，治疗，卫生保健的机会，以及在整个范围内的皮肤和 系统性狼疮 使用基于LUMEN人群的队列，我们的目标是：1）描述合并症的模式及其 对SLE和CLE患者结局的影响; 2）描述 阿片类药物在SLE患者中的一般情况，通过潜在的共病疼痛状况; 3）确定获得 SLE和CLE患者的专科护理和预防服务;以及4）检查社区如何 通过区域剥夺指数，社会经济剥夺影响合并症、阿片类药物使用和获得 在乎 我们还将试点一个创新的、安全的、移动的个人健康平台（Hugo），使患者能够访问 来自多个EHR和其他医疗保健信息源的信息，包括药房记录 并与研究人员分享。Hugo平台在促进临床研究方面具有巨大的潜力， 注册表设置。Hugo的成功使用将是将其应用于多种CDC狼疮的概念验证 登记研究，并转变基于登记研究的随访和临床研究的概念化和实施方式 在整个疾病预防控制中心狼疮登记协会

Project Summary Knowledge about lupus is biased towards the severe end of the spectrum of the disease because of difficulty assembling population-based cohorts of persons with lupus. An urgent need to expand the basic epidemiologic understanding of cutaneous and systemic lupus in four content areas (i.e., natural history, treatment, health care access, and disparities) was identified by the Centers for Disease Control and Prevention. Our project addresses these needs using the unique research infrastructure of the Rochester Epidemiology Project (REP). The REP contains longitudinal data on residents of a 27-county region in Minnesota and Wisconsin. Nested within the medical record-linkage system of the REP, we have identified population-based cohorts of 583 persons with cutaneous lupus erythematosus (CLE) and 434 persons with systemic lupus erythematosus (SLE) matched by sex, age, race/ethnicity and county of residence to population-based referents without SLE or CLE. These cohorts comprise the Lupus Midwest Network (LUMEN). Through the infrastructure of the REP, LUMEN follows individuals regardless of insurance status and encompasses the full spectrum of care, from primary care clinics to tertiary specialty care, and maintains an electronic index of diagnoses and procedures from these records, including all inpatient and outpatient encounters, laboratory measures and drug prescription data. These resources coupled with a team of researchers and clinicians with decades of experience conducting population-based research provide an opportunity to leap forward in our understanding of the natural history, treatment, health care access, and disparities across the full spectrum of cutaneous and systemic lupus. Using the LUMEN population based cohorts, we aim to 1) characterize the patterns of comorbidities and their impact on outcomes among patients with SLE and CLE; 2) describe the prevalence, duration and dose of opioids in patients with SLE in general, by underlying comorbid pain conditions; 3) determine access to specialty care and preventive services in patients with SLE and CLE; and 4) examine how neighborhood socioeconomic deprivation through the area deprivation index, affects comorbidities, opioid use and access to care. We also will pilot an innovative, secure, mobile personal health platform (Hugo) that enables patients to access their information from multiple EHRs and other healthcare information sources, including pharmacy records and share it with the researchers. The Hugo platform has tremendous potential to facilitate clinical research in the registry setting. The successful use of Hugo will be proof-of-concept to apply it across multiple CDC lupus registries and transform how registry-based follow up and clinical research is conceptualized and conducted throughout the entire CDC lupus registries consortium.