Rheumatology Section, Hospital Sierrallana, IFIMAV, University of Cantabria, Avenida Manuel Teir s/n 39300, Torrelavega, Cantabria, Spain.
Expert Rev Clin Immunol. 2012 May;8(4):353-60. doi: 10.1586/eci.12.20.
Systemic lupus erythematosus is a complex and heterogeneous autoimmune disease with a relatively low incidence. Clinical research in this disease at individual centers is complicated by the difficulty of accruing enough patient numbers. In this context, the development of cohorts and multi-institutional registries during the last decades has allowed an increase in knowledge regarding the clinical course and management of this disease. This article aims to describe the main study designs linked to lupus registries and to give an overview of the main international registries and cohorts, as well as their principal achievements in the context of this complex entity.
系统性红斑狼疮是一种复杂且异质性的自身免疫性疾病,发病率相对较低。由于在个体中心难以积累足够的患者数量,因此该疾病的临床研究较为复杂。在这种情况下,过去几十年中队列和多机构注册中心的发展使得人们对该疾病的临床过程和管理有了更多的了解。本文旨在描述与狼疮登记相关的主要研究设计,并概述主要的国际登记处和队列,以及它们在这一复杂实体背景下的主要成就。