Global assessment of characteristics of multiple sclerosis registries; A systematic review

Abstract

Background: 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).

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Europe, Iran; Multiple sclerosis; Registry system.