Volume 10, Issue 2 (Summer 2024)
JMIS 2024, 10(2): 124-137 |
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Ethics code: IR.IUMS.REC.1398.921
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Azadi Cheshmekabodi H, Nasiri S, Sadoughi F. Designing a Minimum Data Set for Spinal Muscular Atrophy Registry in Iran. JMIS 2024; 10 (2) :124-137
URL: http://jmis.hums.ac.ir/article-1-537-en.html
URL: http://jmis.hums.ac.ir/article-1-537-en.html
Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.
Abstract: (1031 Views)
Objective Spinal muscular atrophy (SMA) is the most frequent neuromuscular disorder affecting spinal motor neurons. It is important to collect quality and consistent data on this disease at the national level by developing a minimum data set (MDS). Therefore, the present study aimed to develop an MDS for the SMA registry in Iran.
Methods This is a descriptive-comparative study that was conducted in 2020. In the first stage, the data elements were extracted from the medical records of patients with SMS in Iran. In the second stage, the data elements were compared with those in the national and international registries. In the third stage, to validate the initial MDS, a questionnaire was designed whose validity was confirmed by 16 experts, including neurologists and geneticists, in two Delphi rounds. Finally, the data elements that obtained an inter-rater agreement of 75% or more were included in the final MDS. The data were analyzed using descriptive statistics in Excel software, version 2019.
Results The MDS developed for the SMA registry included 65 data elements in 10 subsets of demographic data, patient clinical history, family history, diagnostic and genetic tests, respiratory status, mobility status, nutritional status, pharmaceutical and therapeutic measures, service provider, and mortality.
Conclusion The developed MDS is recommended to be used to collect integrated information about the SMA in Iran, which can play an important role in improving the quality of information, evaluating the treatment and disease progression, planning and health policy at the national level and reducing medical costs.
Methods This is a descriptive-comparative study that was conducted in 2020. In the first stage, the data elements were extracted from the medical records of patients with SMS in Iran. In the second stage, the data elements were compared with those in the national and international registries. In the third stage, to validate the initial MDS, a questionnaire was designed whose validity was confirmed by 16 experts, including neurologists and geneticists, in two Delphi rounds. Finally, the data elements that obtained an inter-rater agreement of 75% or more were included in the final MDS. The data were analyzed using descriptive statistics in Excel software, version 2019.
Results The MDS developed for the SMA registry included 65 data elements in 10 subsets of demographic data, patient clinical history, family history, diagnostic and genetic tests, respiratory status, mobility status, nutritional status, pharmaceutical and therapeutic measures, service provider, and mortality.
Conclusion The developed MDS is recommended to be used to collect integrated information about the SMA in Iran, which can play an important role in improving the quality of information, evaluating the treatment and disease progression, planning and health policy at the national level and reducing medical costs.
Type of Study: Review |
Subject:
Special
Received: 2024/06/1 | Accepted: 2024/06/28 | Published: 2024/07/1
Received: 2024/06/1 | Accepted: 2024/06/28 | Published: 2024/07/1
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