Population-Based Lupus Registries: Advancing Our Epidemiologic Understanding
Population-Based Lupus Registries: Advancing Our Epidemiologic Understanding
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DOI：
10.1002/art.24835
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发表时间：
2009-10-01
影响因子：
4.7
通讯作者：
Somers, Emily C.
中科院分区：
文献类型：
--
作者：
Lim, S. Sam;Drenkard, Cristina;Somers, Emily C.
40多年来，美国食品和药物管理局（FDA）没有批准用于系统性红斑狼疮（SLE）的新药，最近出现了一系列研究活动和临床试验。然而，对SLE的基本流行病学理解，这是理解整个临床谱和人群负担所必需的，却落后了。美国SLE发病率和患病率的估计值差异很大，并且已经过时（表1）。这可能是由于使用了不同的病例定义、病例确定的来源有限、来源人群小、目标人群不同，以及疾病的多变特征、自我报告的可靠性差、卫生系统数据库中诊断和编码缺乏可靠性，以及与高危人群获得医疗保健有关的问题。对其他类型的狼疮（如原发性盘状狼疮）的估计甚至更不明确。两个正在进行的以人群为基础的狼疮登记处目前正在解决许多这些问题，使用的方法，利用新的联邦，州和地方的合作伙伴关系。为了与“国家关节炎行动计划：公共卫生战略”（1）的目标保持一致，疾病控制和预防中心（CDC）关节炎计划于2002年在3个州的卫生部门竞争性地资助小额赠款，以计划基于人口的登记，以更好地确定确诊狼疮的发病率和患病率，并更好地描述患有这种疾病的个体。人口超过100万且非洲裔美国人比例相对较大的地区有资格获得资助。2003年，格鲁吉亚州和密歇根州的州卫生部门沿着他们的学术合作伙伴埃默里大学和密歇根大学通过竞争获得了进行这项研究的资金。本文提供了一个概述的方法，在这些登记，主要集中在SLE和强调方面独特的狼疮流行病学领域。我们还简要报告了我们的进展情况，并讨论了未来的发展方向。
Without a new medication approved for systemic lupus erythematosus (SLE) by the Food and Drug Administration in more than 40 years, there has been a recent flurry of research activity and clinical trials. However, a basic epidemiologic understanding of SLE, which is necessary to understand the full clinical spectrum and population burden, lags behind. Estimates of the incidence and prevalence of SLE in the US have varied widely and are outdated (Table 1). This is likely due to the use of different case definitions, limited sources for case ascertainment, small source populations, and different demographic groups targeted, as well as the protean characteristics of the disease, poor reliability of self-report, lack of reliability in diagnosis and coding in health system databases, and issues related to access to health care by high-risk populations. Estimates for other types of lupus (eg, primary discoid lupus) are even less well defined. Two ongoing population-based lupus registries are currently addressing many of these issues, using methods that take advantage of novel federal, state, and local partnerships. In keeping with the goals of the “National Arthritis Action Plan: A Public Health Strategy”(1), the Centers for Disease Control and Prevention (CDC) Arthritis Program in 2002 competitively funded small grants in the health departments of 3 states to plan a population-based registry to better define the incidence and prevalence of diagnosed lupus and to better characterize individuals with this disease. Areas with a population of more than 1 million and with a relatively large African American proportion were eligible. In 2003, state health departments in Georgia and Michigan along with their academic partners, Emory University and the University of Michigan, were competitively awarded funding to perform this research. This article provides an overview of the methods used in these registries, focusing primarily on SLE and emphasizing aspects unique in the field of lupus epidemiology. We also report briefly on our progress and discuss future directions.