{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T21:53:39Z","timestamp":1777672419743,"version":"3.51.4"},"reference-count":49,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2025,11,13]],"date-time":"2025-11-13T00:00:00Z","timestamp":1762992000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100012021","name":"Iran University of Medical Sciences","doi-asserted-by":"publisher","award":["1402-4-99-28185"],"award-info":[{"award-number":["1402-4-99-28185"]}],"id":[{"id":"10.13039\/100012021","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["HIM J"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Haemophilia is a lifelong and chronic disease that has adverse consequences for the patient. The haemophilia registry is a key tool for managing this disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>The present study aimed to design a minimum dataset for developing a registry system for haemophilia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method:<\/jats:title>\n                    <jats:p>This study was conducted in two stages. In the first stage, in order to conduct a scoping review, PubMed, Scopus and Web of Science databases were searched using relevant keywords up to 4 July 2025. The study selection process was based on the PRISMA guidelines, and finally, 40 articles were included. In the second stage, the data items retrieved from the studies were evaluated and consulted by 14 haematology specialists through a questionnaire. The minimum data items for haemophilia registry were confirmed based on the level of agreement of the participants (more than 75%), and descriptive statistics were used for data analysis, which was performed using the SPSS software (IBM Corp., Armonk, NY, USA).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The initial minimum data items for the haemophilia registry system were extracted from 40 studies. These items included 77 items in 4 main categories: demographic data (21 items), laboratory data (32 items), clinical data (21 items) and adverse outcomes (3 items). Finally, these data items were validated by 14 haematology specialists. In the final dataset, 58 items, distributed across 4 categories, achieved an agreement of more than 75%, comprising 8 demographic items, 28 laboratory items, 17 clinical items and 3 adverse outcome items.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Registries record different data according to their purposes. The importance of this work lies in providing a minimum dataset for registering haemophilia patients in Iran, which can help improve the quality of care, facilitate future research and align with international registry systems for bleeding diseases. Therefore, the findings of this study provide a basis for designing, implementing and improving the haemophilia registry system in Iran.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Implications for health information management practice:<\/jats:title>\n                    <jats:p>The findings of this study provide a strong foundation for designing and implementing a National Haemophilia Registry in Iran. This system will standardise and integrate data, prevent duplicate records and enhance treatment planning. It will also support epidemiological and clinical research with links to international databases, while improving patient care, follow-up and reducing complications. Overall, it can help align Iran with global standards for managing bleeding disorders.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/18333583251389777","type":"journal-article","created":{"date-parts":[[2025,11,13]],"date-time":"2025-11-13T13:48:13Z","timestamp":1763041693000},"page":"69-79","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":1,"title":["Minimum dataset for the development of the National Haemophilia Registry"],"prefix":"10.1177","volume":"55","author":[{"given":"Boshra","family":"Farajollahi","sequence":"first","affiliation":[{"name":"Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mohammadjavad","family":"Sayadi","sequence":"additional","affiliation":[{"name":"Department of Computer Engineering, Technical and Vocational University (TVU), Tehran, Iran"},{"name":"Department of Computer Engineering, University of Applied Science and Technology (UAST), Tehran, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Babak","family":"Abdolkarimi","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Hakim Children hospital, Tehran University of Medical Sciences, Tehran, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shadi","family":"Tabibian","sequence":"additional","affiliation":[{"name":"Blood Diseases Research Center (BDRC), Iranian Comprehensive Hemophilia Care Center, Iran University of Medical Sciences, Tehran, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Malihe","family":"Sadeghi","sequence":"additional","affiliation":[{"name":"Cancer Research Center, Semnan University of Medical Sciences, Semnan, Iran"},{"name":"Department of Health Information Technology, School of Allied Medical Sciences, Semnan University of Medical Sciences, Semnan, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6879-5415","authenticated-orcid":false,"given":"Abbas","family":"Sheikhtaheri","sequence":"additional","affiliation":[{"name":"Health Management and Economics Research Center, Health Management Research Institute, Iran University of Medical Sciences, Tehran, Iran"},{"name":"Digital Health and Artificial Intelligence in Medicine Research Unit, Iran University of Medical Sciences, Tehran, Iran"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2025,11,13]]},"reference":[{"key":"e_1_3_2_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02862.x"},{"key":"e_1_3_2_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14138"},{"key":"e_1_3_2_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12147"},{"key":"e_1_3_2_5_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2012-02-408930"},{"key":"e_1_3_2_6_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0037-1617205"},{"key":"e_1_3_2_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rpth.2023.102264"},{"key":"e_1_3_2_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/10245332.2015.1125080"},{"issue":"3","key":"e_1_3_2_9_1","first-page":"136","article-title":"Inherited bleeding disorders: Results from the Italian Regional Haemophilia Centre of Pescara","volume":"6","author":"Dragani A","year":"2008","unstructured":"Dragani A, Malizia R, Iuliani O, et al. 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