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类风湿关节炎的人群研究。一种长期随访研究方法。

The population based studies in rheumatoid arthritis. A method of longterm followup studies.

作者信息

Kvien Tore K, Uhlig Till

机构信息

Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway.

出版信息

J Rheumatol Suppl. 2004 Mar;69:35-40.

Abstract

This article describes the aim, organization, data collection, and selected results from the Oslo Rheumatoid Arthritis Register (ORAR). The ORAR was established in 1994 and is annually updated with new and diseased cases. Inclusion criteria were a diagnosis of rheumatoid arthritis (RA) and a residential address in Oslo. As of January 1, 1994, Oslo had 477,781 inhabitants, 2 centers providing rheumatological health services, in close collaboration with general practitioners, and no fulltime private practising rheumatologists. Patients with RA ever treated in one of the 2 hospitals were identified and enrolled in ORAR. We assumed that patients in ORAR represented the majority of patients with RA in the county. Data collections have been performed as mail surveys and clinical examinations. By January 1, 1994, 1552 RA patients were included in the register; currently, 1626 are included. The completeness of the register has been estimated to be about 85%, based on a population survey. Response rates in ORAR surveys and clinical examinations have been between 60% and 80%. Results have been provided, for example, on incidence and prevalence linked to health outcomes, performance of health status measures, and occurrence of osteoporosis and secondary Sjögren's syndrome. The ORAR has provided epidemiological data that is representative of the entire patient population in the county.

摘要

本文介绍了奥斯陆类风湿关节炎登记处(ORAR)的目标、组织架构、数据收集情况以及部分选定结果。ORAR成立于1994年,每年都会更新新增病例和患病病例。纳入标准为类风湿关节炎(RA)诊断以及奥斯陆的居住地址。截至1994年1月1日,奥斯陆有477,781名居民,有2个提供风湿病健康服务的中心,与全科医生密切合作,且没有全职私人执业风湿病医生。在2家医院中接受过治疗的RA患者被识别出来并纳入ORAR。我们假定ORAR中的患者代表了该郡大多数RA患者。数据收集通过邮寄调查和临床检查进行。截至1994年1月1日,登记册中纳入了1552名RA患者;目前,有1626名患者。根据一项人口调查,登记册的完整性估计约为85%。ORAR调查和临床检查的回应率在60%至80%之间。已提供了例如与健康结果相关的发病率和患病率、健康状况测量指标的表现以及骨质疏松症和继发性干燥综合征的发生情况等结果。ORAR提供了代表该郡全体患者人群的流行病学数据。

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