Hanyang University Hospital for Rheumatic Diseases, Seoul, South Korea.
Semin Arthritis Rheum. 2012 Jun;41(6):745-51. doi: 10.1016/j.semarthrit.2011.09.007. Epub 2011 Dec 9.
The object of this study was to introduce the KORean Observational study Network for Arthritis (KORONA) registry with an emphasis on the design of the Korean rheumatoid arthritis (RA) national database, as well as to provide an overview of the RA patients who are currently registered in KORONA.
The KORONA was established in July 2009 by the Clinical Research Center for Rheumatoid Arthritis (CRCRA) in South Korea. KORONA is based on a prospective protocol and standard, defined data collection instruments. Demographic and clinical features, laboratory and radiologic data, health-related outcomes, treatment side effects, resource utilization, and health behaviors of the RA cohort patients are recorded in a database.
A total of 23 institutions, which are about 38% of the rheumatologic departments at tertiary academic hospitals across South Korea, are part of KORONA. The quality control of data collection and management has been performed through annual monitoring and auditing, staff training, and providing standard operation protocol by the executive committee of CRCRA. As of 31 December 2010, 4721 patients with established RA were included in KORONA, because an annual survey had started to be performed in July 2010.
KORONA is the first nationwide Korean RA-specific cohort and it will provide valuable "real-world" information for Korean RA patients.
本研究旨在介绍 KORean 观察性研究网络关节炎(KORONA)登记处,重点介绍韩国类风湿关节炎(RA)国家数据库的设计,并概述目前在 KORONA 登记的 RA 患者。
KORONA 由韩国临床类风湿关节炎研究中心(CRCRA)于 2009 年 7 月成立。KORONA 基于前瞻性方案和标准,定义了数据收集工具。RA 队列患者的人口统计学和临床特征、实验室和放射学数据、健康相关结局、治疗副作用、资源利用和健康行为都记录在数据库中。
共有 23 家机构参与了 KORONA,约占韩国三级学术医院风湿病科的 38%。CRCRA 执行委员会通过年度监测和审计、员工培训以及提供标准操作方案,对数据收集和管理的质量控制进行了管理。截至 2010 年 12 月 31 日,已有 4721 例确诊的 RA 患者纳入 KORONA,因为自 2010 年 7 月开始进行年度调查。
KORONA 是第一个全国性的韩国 RA 特定队列,它将为韩国 RA 患者提供有价值的“真实世界”信息。