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 聚集以人群为基础的狼疮患者队列。迫切需要扩大基础流行病学 对皮肤和系统性红斑狼疮在四个方面(即自然病史、治疗、健康)的了解 疾病控制和预防中心确定了医疗服务可获得性和差异)。我们的项目 使用罗切斯特流行病学项目(REP)独特的研究基础设施来满足这些需求。 该代表包含明尼苏达州和威斯康星州27个县地区居民的纵向数据。 嵌套在代表的医疗记录联系系统中，我们已经确定了基于人群的队列 583例皮肤性红斑狼疮和434例系统性红斑狼疮 (SLE)按性别、年龄、种族/民族和居住县与没有SLE的人口参照者匹配 或CLE。这些队列组成了狼疮中西部网络(Lumen)。通过代表的基础设施， Lumen跟踪个人，无论保险状态如何，并涵盖全方位的护理，从 从初级保健诊所到三级专科护理，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、实验室措施和药物 处方数据。这些资源再加上一支拥有数十年经验的研究人员和临床医生团队 进行以人口为基础的研究的经验为我们的理解提供了一个飞跃的机会 自然病史、治疗、医疗保健途径以及全系列皮肤和皮肤的差异 系统性红斑狼疮。 使用基于管腔人群的队列，我们的目标是1)描述共病的模式及其 对SLE和CLE患者预后的影响；2)描述以下疾病的患病率、持续时间和剂量 系统性红斑狼疮患者中的阿片类药物，根据潜在的共病疼痛状况；3)确定获得 SLE和CLE患者的特殊护理和预防服务；以及4)检查邻居如何 通过面积剥夺指数的社会经济剥夺，影响共病、阿片类药物的使用和获得 关心。 我们还将试点一个创新、安全、移动的个人健康平台(Hugo)，使患者能够访问 他们的信息来自多个电子病历和其他医疗保健信息来源，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个疾控中心狼疮的概念验证 登记和改变基于登记的随访和临床研究的概念化和进行方式 在整个疾控中心狼疮登记处联盟。

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.