Introduction: Multiple Sclerosis (MS) as one of the most common causes of disability around the world requires a uniform standardized information registry system to help policy-makers systematically plan for care quality improvements. The aim of this study is to verify aspects and methodological scopes of MS registry system in Iran.
Methods: The National MS Registry System in Iran (NMSRI) is a population-based registry system that systemically identifies and collects all MS patients' data in a specific geographical area. It supports 22 medical science universities and 13 MS societies in 18 provinces of Iran. The information items taken from each patient to collect the data set and data are gathered from all available sources including public and private hospitals, clinics, neurologists' offices, and all MS societies. They are recorded in District Health Information System 2 (DHIS2) software.
Discussion: The NMSRI is a successful system of collecting MS patients' data. It can lead to positive results, such as updating patients' data to receive new treatments, fair allocation of treatment budgets, and providing researchers with novel ideas to carry out research projects.
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http://dx.doi.org/10.1016/j.msard.2023.104610 | DOI Listing |
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