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阿根廷多发性硬化症登记处(RelevarEM):方法学方面和方向。

The Argentinean multiple sclerosis registry (RelevarEM): Methodological aspects and directions.

机构信息

Centro de esclerosis múltiple de Buenos Aires, Hospital Italiano de Buenos Aires, Gascón 450,1181, Buenos Aires, Argentina.

MS Section Hospital Britanico Buenos Aires, Argentina; Fundación Favaloro/INECO, Buenos Aires, Argentina.

出版信息

Mult Scler Relat Disord. 2019 Jul;32:133-137. doi: 10.1016/j.msard.2019.05.004. Epub 2019 May 15.

Abstract

Despite that different registries already exist in various countries in Europe and North America, no ongoing nationwide registry exists in Latin America (LATAM), a region where the disease behaves differently than in other regions. The objective of this document is to describe the methodology behind RelevarEM, the first nationwide MS registry in Argentina and LATAM. METHODS: In this article, we described the creation, implementation and data management of the nationwide MS registry in Argentina. The registry contains information on the structure, ethical aspects, implementation and variables of the registry (Clinical Trials registry number NCT NCT03375177). CONCLUSION: RelevarEM is the first MS nationwide registry in Argentina, as well as in LATAM, with the objective of providing reliable real-world data of MS in the country.

摘要

尽管欧洲和北美的许多国家已经存在不同的登记处,但拉丁美洲(LATAM)尚未建立全国性的登记处,该地区的疾病表现与其他地区不同。本文档的目的是描述阿根廷和 LATAM 首个全国性多发性硬化症(MS)登记处 RelevarEM 的背后方法。方法:本文描述了阿根廷全国性 MS 登记处的创建、实施和数据管理。该登记处包含有关登记处结构、伦理方面、实施和变量的信息(临床试验注册号 NCT NCT03375177)。结论:RelevarEM 是阿根廷首个全国性 MS 登记处,也是 LATAM 地区的首个登记处,旨在提供该国 MS 的可靠真实世界数据。

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