Epidemiology of Lupus: Longitudinal Studies in Population-Based Cohorts - 2022

项目摘要 关于狼疮的知识是偏向于疾病谱的严重端，由于难以组装 基于人群的狼疮患者队列。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 使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， 它包含明尼苏达州和威斯康星州27个县的居民的纵向数据。我们有 聚集的人群为基础的队列，包括流行和发病率系统性狼疮的人 与一般人群对照药物匹配的红斑狼疮（SLE）和皮肤红斑狼疮（CLE） 按性别、年龄、人种/种族和居住县列出的无SLE/CLE患者。这些群体组成了狼疮 中西部网络（LUMEN）。通过REP基础设施，LUMEN跟踪个人，无论 保险状态，涵盖从初级保健诊所到三级专科的全方位护理 护理，并保持诊断和程序的电子索引，包括所有住院和门诊 接触、实验室测量和药物处方数据。在这场非常成功的 研究SLE和CLE中的多吗啡，阿片类药物疼痛治疗，以及医疗保健的可及性和差距，我们的 一个由具有数十年人口研究经验的研究人员和临床医生组成的团队现在将 专注于新的研究问题，旨在对公共卫生产生重大影响，并在我们的 了解自然史、治疗、医疗保健获取以及整个领域的差异 CLE和SLE。使用LUMEN基于人群的队列，我们的目标是1）确定狼疮的贡献 肾炎（LN）和抗磷脂综合征（APS）的过度死亡率和计划外的医疗保健 利用率（即，急诊科就诊和住院）; 2）确定 LN对心血管疾病（心肌梗死和中风），感染， 和骨质疏松症; 3）确定SLE特异性筛查服务的可及性， 由健康、年龄、性别和种族/民族的社会决定因素决定的糖皮质激素使用模式;以及4）确定 40年来CLE向SLE转变的时间转换率和风险因素， 假设a）大多数从CLE到SLE的转变发生在CLE诊断的五年内，和B）口服 避孕药或绝经后激素的使用增加了从CLE转变为SLE的风险。这些 项目将告知SLE在明确定义的疾病表型中的个体化诊断， 干预措施，以优化患者护理，预防或减少狼疮患者的不良后果，并将 确定CLE治疗干预的机会之窗，以防止向SLE的转变。

PROJECT SUMMARY Knowledge about lupus is biased towards the severe end of the disease spectrum due to 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), which contains longitudinal data on residents of a 27-county region in Minnesota and Wisconsin. We have assembled population-based cohorts comprised of persons with prevalent and incidence systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE) matched to general population comparators without SLE/CLE by sex, age, race/ethnicity, and county of residence. These cohorts comprise the Lupus Midwest Network (LUMEN). Through the REP infrastructure, 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, including all inpatient and outpatient encounters, laboratory measures, and drug prescription data. In this competitive renewal of a highly successful grant investigating multimorbidity in SLE and CLE, opioid pain therapy, and healthcare access and gaps, our team of researchers and clinicians with decades of experience conducting population-based research will now focus on new research questions designed to have a high public health impact and to leap forward in our understanding of the natural history, treatment, healthcare access, and disparities across the full spectrum of CLE and SLE. Using the LUMEN population-based cohorts, we aim to 1) determine the contributions of lupus nephritis (LN) and anti-phospholipid syndrome (APS) to the excess mortality and unplanned healthcare utilization (i.e., emergency department visits and hospitalizations) among patients with SLE; 2) determine the contribution of LN to the excess risk of cardiovascular disease (myocardial infarction and stroke), infections, and osteoporosis among patients with SLE; 3) determine access to SLE-specific screening services and patterns of glucocorticoid use by social determinants of health, age, sex, and race/ethnicity; and 4) determine the transition rates over time and risk factors for transition from CLE to SLE over four decades to test the hypothesis that a) most transitions from CLE to SLE occur within five years of the CLE diagnosis, and b) oral contraceptives or postmenopausal hormone use increase the risk of transitioning from CLE to SLE. These projects will inform the individualized prognostication of SLE in clearly defined disease phenotypes and inform interventions to optimize patient care, prevent or reduce adverse outcomes in patients with lupus, and will identify a window of opportunity in CLE for therapeutic interventions to prevent the transition to SLE.