Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran.
Faculty of Medicine, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Mult Scler Relat Disord. 2022 Jul;63:103928. doi: 10.1016/j.msard.2022.103928. Epub 2022 May 28.
Developing a multiple sclerosis (MS) registry system in some countries has helped to recognize better and monitor the disease. This study was aimed to compare global characteristics of MS registries and promote and update the national MS registry in Iran (NMSRI).
This systematic review was conducted through searching Embase® Scopus, Medline®, Conference Proceeding Citation Index and Google Scholar. Two distinct researchers defined the research question and appropriate keywords. The extracted articles passed through two screening filters. The remaining articles were scanned full-text and included in this study. The bias assessment was conducted through in a score between 0 and 9 and articles with a score of five and above were included in the final analysis according to methodological development and reporting of review approach.
We found 1498 articles after the primary search, of which 26 articles were included in this study after removing 55 duplicate articles, 1367 irrelevant articles, six non-English articles, and 44 non-eligible articles. Fourteen MS registries from 12 countries were compared to each other in the context of goal, data collection, funding, quality control, and governance. MS registries majorly follow the evaluation of epidemiologic and treatments characteristics of MS patients, and usually established by national organizations and MS associations. MS registries in European nations are developed earlier than NMSRI; although, it have promising properties in regard to goal, data collection, quality control, and governance in comparison to other MS registries.
The MS registry systems developed from 1956 in European countries for improving quality of care of subjects. We found that the NMSRI has used previous experiences well and has achieved promising properties equal to European countries. Financial challenges should be addressed to improve this registry in the following years.
一些国家开发多发性硬化症（MS）登记系统有助于更好地认识和监测该疾病。本研究旨在比较 MS 登记处的全球特征，并促进和更新伊朗国家多发性硬化症登记处（NMSRI）。
通过搜索 Embase® Scopus、Medline®、会议论文引文索引和 Google Scholar 进行了这项系统评价。两位不同的研究人员确定了研究问题和适当的关键词。提取的文章经过两个筛选过滤器。剩余的文章进行了全文扫描，并包含在本研究中。通过评分在 0 到 9 之间进行偏倚评估，根据方法学发展和综述方法的报告，将评分在 5 分及以上的文章纳入最终分析。
在初步搜索后，我们发现了 1498 篇文章，其中 26 篇文章在去除 55 篇重复文章、1367 篇不相关文章、6 篇非英文文章和 44 篇不合格文章后被纳入本研究。从目标、数据收集、资金、质量控制和治理等方面比较了来自 12 个国家的 14 个 MS 登记处。MS 登记处主要关注 MS 患者的流行病学和治疗特征的评估，通常由国家组织和 MS 协会建立。欧洲国家的 MS 登记处比 NMSRI 开发得更早；尽管与其他 MS 登记处相比，它在目标、数据收集、质量控制和治理方面具有良好的特性。
自 1956 年以来，欧洲国家为改善患者护理质量而开发了 MS 登记系统。我们发现，NMSRI 很好地利用了以前的经验，并取得了与欧洲国家相当的有前途的特性。为了在未来几年改善该登记处，应解决财务挑战。
