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Lessons Learned from the Population-Based Multiple Sclerosis Registries in the Developed Countries

Farkhondeh Asadi, Hassan Emami, Hamid Moghaddasi, Sara Ghalaneh
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Abstract

Context: The prevalence of Multiple Sclerosis (MS) in the world has grown and has attracted particular attention on the international level and governments, has considered prevention interventions and managing the symptoms of the disease to reduce the economic burden and has improved the quality of life of these patients necessary. One of the most important strategies in this field is MS population-based registry. Accordingly, this study was designed to identify the components of MS population-based registries within the developed countries.

Evidence Acquisition: The present study is a review article that was conducted in 2018. The population of the study consisted of MS population-based registry systems of developed countries such as USA, France, and Denmark. Based on the combination of related keywords, about 60 papers appropriately and after extraction, categorization and integration were formulated in the form of proper sequence for the purpose of the study.

Results: The main components of MS population-based registries in developed countries included registry goals, information resources, Minimum Data Sets (MDS), types of processes, types of reports, quality control measures, data transmission time limits, responsible for recording and collecting data, responsible organization and executor, data transmission method and the privacy practices

Conclusion: With regard to the results, it is suggested that the developing countries must consider creating an MS population-based registry as a national program due to their health system and the MS population-based registries structure in developed countries, so that they can adopt a suitable strategy for preventing and controlling the disease.


Keywords

multiple sclerosis (MS), population-based registry, MS population-based registry

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DOI: https://doi.org/10.22037/aab.v11i1.27402

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