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Neuromyelitis Optica Spectrum Disorders Registry System in Iran: Validity of Data Sets Publisher



Khodaie F1 ; Mohamadi M1 ; Ebrahimi Y1 ; Sahraian MA1 ; Moghadasi AN1 ; Ayoubi S1 ; Goudarzi H2 ; Paybast S1 ; Kamyari N3 ; Asgari N4 ; Fujihara K5, 6, 7 ; Heidari H1 ; Eskandarieh S1
Authors
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Authors Affiliations
  1. 1. Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran
  2. 2. Center for Medical Education and International Relations, Faculty of Medicine, Hokkaido University, Sapporo, Japan
  3. 3. Department of Biostatistics and Epidemiology, School of Health, Abadan University of Medical Sciences, Abadan, Iran
  4. 4. Department of Neurology, Slagelse & Institute of Regional Health Research and Institute of Molecular Medicine, University of Southern Denmark, Odense, Denmark
  5. 5. Department of Multiple Sclerosis Therapeutics, Fukushima Medical University School of Medicine, Fukushima, Japan
  6. 6. Multiple Sclerosis & Neuromyelitis Optica Center, Koriyama, Japan
  7. 7. Department of Neurology, Tohoku University Graduate School of Medicine, Sendai, Japan

Source: Multiple Sclerosis and Related Disorders Published:2024


Abstract

Background: A targeted structure for recording, monitoring, and follow-up of patients with neuromyelitis optica spectrum disorders (NMOSD) is in demand. To obtain the correct and uniform standardized information registry system, it is necessary to use a data set that has good validity to help policy-makers systematically plan for improvements in the quality of care. The main goal of the present study was to develop a NMOSD data set for the national registry system in Iran (NMORI) and to evaluate the validity of the presented data set. Methods: The NMORI data set consisted of baseline characteristics, disease and exposure history, background and past medical history, diagnosis and treatment, clinical features, imaging, and para-clinical findings. The content validity was evaluated by 18 experts from Iran, Japan, and Denmark by scoring each of the questionnaire items in term of transparency, simplicity, and relevance. According to the points given, the content validity index (CVI) and content validity ratio (CVR) scores were calculated and compared with the critical limit. Results: The current study was designed as a 125-items data set which was considered valid. In terms of relevance 110 out of 125 items, simplicity 113 out of 125 items, and transparency 123 out of 125 items had Item-CVI>0.79. All Scale-level-CVI values were greater than 0.9, showing noticeable content validity. In this data set, 112 items had CVR > 0.49, which was considered an acceptable level of significance. Conclusion: The implementing of NMORI is important in a developing country such as Iran with significant increasing prevalence of this disease. This registry facilitates a uniform and valid diagnosis and is considered valid for clinical investigation and epidemiological research on NMOSD. Scientists and healthcare policymakers can rely on a validated data set in order to have access to accurate data. © 2024 Elsevier B.V.
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