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METEOR十年(一个国际类风湿性关节炎注册库):发展、研究机遇与未来展望

Ten years of METEOR (an international rheumatoid arthritis registry): development, research opportunities and future perspectives.

作者信息

Bergstra Sytske Anne, Machado Pedro M M C, van den Berg Rosaline, Landewé Robert B M, Huizinga Tom W J

机构信息

Department of Rheumatology, Leiden University Medical Center, Leiden, the Netherlands.

Centre for Rheumatology Research and MRC Centre for Neuromuscular Diseases, University College London, UK.

出版信息

Clin Exp Rheumatol. 2016 Sep-Oct;34(5 Suppl 101):S87-S90. Epub 2016 Oct 19.

Abstract

OBJECTIVES

Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research opportunities and future perspectives are described.

METHODS

The METEOR tool is a free, online, internationally available tool in which daily practice visits of all rheumatoid arthritis patients visiting a rheumatologist can be registered. In the tool, disease characteristics, patient- and physician-reported outcomes and prescribed treatment could be entered. These can be subsequently displayed in powerful graphics, facilitating treatment decisions and patient-physician interactions. An upload facility is also available, by which data from local electronic health record systems or registries can be integrated into the METEOR database. This is currently being actively used in, among other countries, the Netherlands, Portugal and India.

RESULTS

Since an increasing number of hospitals use electronic health record systems, the upload facility is being actively used by an increasing number of sites, enabling them to benefit from the benchmark and research opportunities of METEOR. Enabling a connection between local registries and METEOR is a well established but time-consuming process for which an IT-specialist of METEOR and the local registry are necessary. However, once this process has been finished, data can be uploaded regularly and relatively easily according to a pre-specified format. The METEOR database currently contains data from >39,000 patients and >200,000 visits, from 32 different countries and is ever increasing. Continuous efforts are being undertaken to increase the quality of data in the database.

CONCLUSIONS

Since METEOR was founded 10 years ago, many rheumatologists worldwide have used the METEOR tool to follow-up their patients and improve the quality of care they provide to their patients. Combined with uploaded data, this has led to an extensive growth of the database. It now offers a unique opportunity to study daily practice care and to perform research regarding cross-country differences in a large, worldwide setting, which could provide important knowledge about disease and its treatment in different geographic and clinical settings.

摘要

目的

十年前开发了METEOR工具,用于模拟治疗达标情况并创建一个国际研究数据库。本文描述了METEOR工具和数据库的开发情况、研究机会及未来展望。

方法

METEOR工具是一款免费的在线工具,全球均可使用,可用于登记所有前往风湿病专科医生处就诊的类风湿关节炎患者的日常诊疗情况。在该工具中,可以录入疾病特征、患者及医生报告的结局以及所开具的治疗方案。随后这些信息能够以功能强大的图表形式展示,有助于做出治疗决策以及促进医患互动。该工具还提供了上传功能,可将本地电子健康记录系统或登记处的数据整合到METEOR数据库中。目前,荷兰﹑葡萄牙和印度等国正在积极使用这一功能。

结果

由于越来越多的医院使用电子健康记录系统,越来越多的机构开始积极使用上传功能,从而能够受益于METEOR的基准比较和研究机会。实现本地登记处与METEOR之间的连接是一个既定但耗时的过程,需要METEOR的信息技术专家和本地登记处共同参与。不过,一旦完成这一过程,数据就可以按照预先指定的格式定期且相对轻松地上传。METEOR数据库目前包含来自32个不同国家的超过39,000名患者的数据以及超过200,000次就诊记录,并且数据量还在不断增加。目前正在持续努力提高数据库中的数据质量。

结论

自METEOR于十年前创建以来,全球许多风湿病学家都使用该工具对患者进行随访,并提高他们为患者提供的护理质量。结合上传的数据,这使得数据库得到了广泛扩充。现在,它为研究日常诊疗护理以及在全球范围内进行跨国差异研究提供了独特的机会,这可能会提供有关不同地理和临床环境中疾病及其治疗的重要知识。

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