Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study
ABSTRACT Background and Aims Registries are powerful tools for data management. Designing a minimum data set as the first step in registry development helps collect relevant and efficient data. The aim of this study was to develop a minimum data set for the primary immunodeficiency registry system....
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| Format: | Article |
| Language: | English |
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Wiley
2025-07-01
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| Series: | Health Science Reports |
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| Online Access: | https://doi.org/10.1002/hsr2.71015 |
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| author | Saman Mohammadpour Hassan Emami Sima Shokri Rafat Bagherzadeh Soqrat Omari Shekaftik Zanko Hosseini |
| author_facet | Saman Mohammadpour Hassan Emami Sima Shokri Rafat Bagherzadeh Soqrat Omari Shekaftik Zanko Hosseini |
| author_sort | Saman Mohammadpour |
| collection | DOAJ |
| description | ABSTRACT Background and Aims Registries are powerful tools for data management. Designing a minimum data set as the first step in registry development helps collect relevant and efficient data. The aim of this study was to develop a minimum data set for the primary immunodeficiency registry system. Methods This cross‐sectional study was conducted at two stages in 2023. In the first stage, primary data elements were extracted from related literature. In the second stage, based on the data elements extracted from the first stage, a questionnaire was developed. Then, using the questionnaire and the Quantitative Delphi Method, the minimal data set on primary immunodeficiency was obtained from 10 asthma and allergy specialists. Results In the first stage, the initial minimum data set consisted of 198 data elements, which were categorized into two categories: administrative and clinical. Administrative data were classified into two categories: demographic and patient index. Clinical data were categorized into four categories: patient history, physical examination, tests, and diagnosis. In the second stage, eight elements were removed during the first round of Delphi. One element was removed in the second round of Delphi. In the first round of Delphi, 13 elements were recommended. In the second round of Delphi, all the recommended elements were included in the final list of the minimum data set. Finally, 202 data elements were selected as the final minimum data set. Conclusion The created primary immunodeficiency minimum data set is expected to improve decision‐making by clinicians and policymakers, and also improve scientific research in this field. |
| format | Article |
| id | doaj-art-9519fe28c6da4d5083c98e3a31380f45 |
| institution | Kabale University |
| issn | 2398-8835 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Wiley |
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| series | Health Science Reports |
| spelling | doaj-art-9519fe28c6da4d5083c98e3a31380f452025-08-20T04:02:06ZengWileyHealth Science Reports2398-88352025-07-0187n/an/a10.1002/hsr2.71015Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi StudySaman Mohammadpour0Hassan Emami1Sima Shokri2Rafat Bagherzadeh3Soqrat Omari Shekaftik4Zanko Hosseini5Department of Health Information Technology and Management, School of Allied Medical Sciences Shahid Beheshti University of Medical Sciences Tehran IranDepartment of Health Information Technology and Management, School of Allied Medical Sciences Shahid Beheshti University of Medical Sciences Tehran IranDepartment of Allergy and Clinical Immunology, Rasool e Akram Hospital Iran University of Medical Sciences Tehran IranDepartment of English Language, School of Health Management and Information Sciences Iran University of Medical Sciences Tehran IranDepartment of Occupational Health Engineering, School of Public Health Tehran University of Medical Sciences Tehran IranDepartment of Health Information Management, School of Medicine Ardabil University of Medical Sciences Ardabil IranABSTRACT Background and Aims Registries are powerful tools for data management. Designing a minimum data set as the first step in registry development helps collect relevant and efficient data. The aim of this study was to develop a minimum data set for the primary immunodeficiency registry system. Methods This cross‐sectional study was conducted at two stages in 2023. In the first stage, primary data elements were extracted from related literature. In the second stage, based on the data elements extracted from the first stage, a questionnaire was developed. Then, using the questionnaire and the Quantitative Delphi Method, the minimal data set on primary immunodeficiency was obtained from 10 asthma and allergy specialists. Results In the first stage, the initial minimum data set consisted of 198 data elements, which were categorized into two categories: administrative and clinical. Administrative data were classified into two categories: demographic and patient index. Clinical data were categorized into four categories: patient history, physical examination, tests, and diagnosis. In the second stage, eight elements were removed during the first round of Delphi. One element was removed in the second round of Delphi. In the first round of Delphi, 13 elements were recommended. In the second round of Delphi, all the recommended elements were included in the final list of the minimum data set. Finally, 202 data elements were selected as the final minimum data set. Conclusion The created primary immunodeficiency minimum data set is expected to improve decision‐making by clinicians and policymakers, and also improve scientific research in this field.https://doi.org/10.1002/hsr2.71015MDSminimum data setPIDprimary immunodeficiencyregistry |
| spellingShingle | Saman Mohammadpour Hassan Emami Sima Shokri Rafat Bagherzadeh Soqrat Omari Shekaftik Zanko Hosseini Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study Health Science Reports MDS minimum data set PID primary immunodeficiency registry |
| title | Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study |
| title_full | Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study |
| title_fullStr | Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study |
| title_full_unstemmed | Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study |
| title_short | Primary Immunodeficiency Registry System: The Minimum Data Set Designing Phase—A Systematic Review and Quantitative Delphi Study |
| title_sort | primary immunodeficiency registry system the minimum data set designing phase a systematic review and quantitative delphi study |
| topic | MDS minimum data set PID primary immunodeficiency registry |
| url | https://doi.org/10.1002/hsr2.71015 |
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