{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T16:45:22Z","timestamp":1777481122109,"version":"3.51.4"},"reference-count":53,"publisher":"Public Library of Science (PLoS)","issue":"1","license":[{"start":{"date-parts":[[2025,1,7]],"date-time":"2025-01-07T00:00:00Z","timestamp":1736208000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:p>Minimum Data Set (MDS) enables integration in data collection, uniform data reporting, and data exchange across clinical and research information systems. The current study was conducted to determine a comprehensive national MDS for the Epidermolysis Bullosa (EB) information management system in Iran. This cross-sectional descriptive study consists of three steps: systematic review, focus group discussion, and the Delphi technique. A systematic review was conducted using relevant databases. Then, a focus group discussion was held to determine the extracted data elements with the help of contributing multidisciplinary experts. Finally, MDSs were selected through the Delphi technique in two rounds. The collected data were analyzed using Microsoft Excel 2019. In total, 103 data elements were included in the Delphi survey. The data elements, based on the experts\u2019 opinions, were classified into two main categories: administrative data and clinical data. The final categories of data elements consisted of 11 administrative items and 92 clinical items. The national MDS, as the core of the EB surveillance program, is essential for enabling appropriate and informed decisions by healthcare policymakers, physicians, and healthcare providers. In this study, a MDS was developed and internally validated for EB. This research generated new knowledge to enable healthcare professionals to collect relevant and meaningful data for use. The use of this standardized approach can help benchmark clinical practice and target improvements worldwide.<\/jats:p>","DOI":"10.1371\/journal.pone.0316791","type":"journal-article","created":{"date-parts":[[2025,1,7]],"date-time":"2025-01-07T18:34:22Z","timestamp":1736274862000},"page":"e0316791","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":2,"title":["Development and validation of the Iranian Minimum Data Set for Epidermolysis Bullosa: A mixed method approach"],"prefix":"10.1371","volume":"20","author":[{"given":"Somayeh","family":"Paydar","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shahrbanoo","family":"Pahlevanynejad","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Farkhondeh","family":"Asadi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hamideh","family":"Ehtesham","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1507-5120","authenticated-orcid":true,"given":"Azam","family":"Sabahi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2025,1,7]]},"reference":[{"issue":"4","key":"pone.0316791.ref001","doi-asserted-by":"crossref","first-page":"a041229","DOI":"10.1101\/cshperspect.a041229","article-title":"Stairways to Advanced Therapies for Epidermolysis Bullosa","volume":"15","author":"L De Rosa","year":"2023","journal-title":"Cold Spring Harbor Perspectives in Biology"},{"issue":"2","key":"pone.0316791.ref002","doi-asserted-by":"crossref","first-page":"343","DOI":"10.1016\/j.clnu.2019.02.023","article-title":"A nutrition-based approach to epidermolysis bullosa: Causes, assessments, requirements and management","volume":"39","author":"S Salera","year":"2020","journal-title":"Clinical Nutrition"},{"issue":"5","key":"pone.0316791.ref003","doi-asserted-by":"crossref","first-page":"551","DOI":"10.1016\/j.abd.2020.05.001","article-title":"Inherited epidermolysis bullosa: update on the clinical and genetic aspects","volume":"95","author":"LM Mariath","year":"2020","journal-title":"Anais brasileiros de dermatologia"},{"issue":"10","key":"pone.0316791.ref004","doi-asserted-by":"crossref","first-page":"1176","DOI":"10.1111\/exd.13979","article-title":"Epidermolysis bullosa: Advances in research and treatment","volume":"28","author":"C Prodinger","year":"2019","journal-title":"Exp Dermatol"},{"issue":"1","key":"pone.0316791.ref005","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1038\/s41572-020-0210-0","article-title":"Epidermolysis bullosa","volume":"6","author":"A Bardhan","year":"2020","journal-title":"Nature reviews Disease primers"},{"key":"pone.0316791.ref006","doi-asserted-by":"crossref","first-page":"107848","DOI":"10.1016\/j.ijscr.2022.107848","article-title":"Recessive dystrophic epidermolysis bullosa (RDEB): Oral manifestation and management rules in oral surgery: A case report","volume":"102","author":"O El Yacoubi","year":"2023","journal-title":"International Journal of Surgery Case Reports"},{"issue":"4","key":"pone.0316791.ref007","doi-asserted-by":"crossref","first-page":"619","DOI":"10.1016\/j.jpedsurg.2022.11.001","article-title":"Our experience of using losartan for esophageal stenosis in children with dystrophic form of congenital epidermolysis bullosa","volume":"58","author":"V Oldakovskiy","year":"2023","journal-title":"J Pediatr Surg"},{"key":"pone.0316791.ref008","article-title":"Heterogeneity of Reported Outcomes in Epidermolysis Bullosa Clinical Research: A Scoping Review as a First Step Towards Outcome Harmonisation","author":"EWH Korte","year":"2023","journal-title":"British Journal of Dermatology"},{"issue":"4","key":"pone.0316791.ref009","doi-asserted-by":"crossref","first-page":"422","DOI":"10.3390\/bioengineering10040422","article-title":"Stem Cell Therapies for Epidermolysis Bullosa Treatment","volume":"10","author":"A Niti","year":"2023","journal-title":"Bioengineering"},{"issue":"3","key":"pone.0316791.ref010","doi-asserted-by":"crossref","DOI":"10.1016\/j.jaad.2022.06.253","article-title":"34728 Epidermolysis bullosa in the pediatric population: Analysis of the KID database","volume":"87","author":"AD Desai","year":"2022","journal-title":"Journal of the American Academy of Dermatology"},{"issue":"1","key":"pone.0316791.ref011","doi-asserted-by":"crossref","first-page":"62","DOI":"10.1111\/ajd.13762","article-title":"Epidemiological, clinical, pathological and genetic characteristics of epidermolysis bullosa in New Zealand","volume":"63","author":"R Gear","year":"2022","journal-title":"Australasian Journal of Dermatology"},{"issue":"12","key":"pone.0316791.ref012","first-page":"1277","article-title":"Eye Involvement and Management in Inherited Epidermolysis Bullosa","volume":"82","author":"Y Bachir","year":"2022","journal-title":"Drugs"},{"issue":"4","key":"pone.0316791.ref013","doi-asserted-by":"crossref","first-page":"995","DOI":"10.1111\/jdv.17012","article-title":"Novel insights into the epidemiology of epidermolysis bullosa (EB) from the Dutch EB Registry: EB more common than previously assumed?","volume":"35","author":"R Baardman","year":"2021","journal-title":"Journal of the European Academy of Dermatology and Venereology"},{"issue":"5","key":"pone.0316791.ref014","doi-asserted-by":"crossref","first-page":"765","DOI":"10.1111\/bjd.21295","article-title":"The importance of accurate epidemiological data of epidermolysis bullosa","volume":"186","author":"R Baardman","year":"2022","journal-title":"The British Journal of Dermatology"},{"issue":"3","key":"pone.0316791.ref015","doi-asserted-by":"crossref","first-page":"99","DOI":"10.52547\/wjps.10.3.99","article-title":"Epidermolysis bullosa registry data in Iran","volume":"10","author":"S Farokhforghani","year":"2021","journal-title":"World Journal of Plastic Surgery"},{"issue":"1","key":"pone.0316791.ref016","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1186\/s13023-022-02448-w","article-title":"Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa","volume":"18","author":"C Liy-Wong","year":"2023","journal-title":"Orphanet Journal of Rare Diseases"},{"issue":"6","key":"pone.0316791.ref017","doi-asserted-by":"crossref","first-page":"1198","DOI":"10.1111\/pde.14340","article-title":"Financial burden of epidermolysis bullosa on patients in the United States","volume":"37","author":"ES Gorell","year":"2020","journal-title":"Pediatric dermatology"},{"issue":"1","key":"pone.0316791.ref018","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s13023-022-02462-y","article-title":"Patients\u2019 and parents\u2019 experiences during wound care of epidermolysis bullosa from a dyadic perspective: a survey study","volume":"17","author":"PJ Mauritz","year":"2022","journal-title":"Orphanet journal of rare diseases"},{"key":"pone.0316791.ref019","doi-asserted-by":"crossref","first-page":"265","DOI":"10.1007\/978-3-662-45698-9_22","volume-title":"Blistering Diseases: Clinical Features, Pathogenesis, Treatment","author":"J-D Fine","year":"2015"},{"issue":"4","key":"pone.0316791.ref020","doi-asserted-by":"crossref","first-page":"819","DOI":"10.1111\/pde.14656","article-title":"Psychosocial impact of epidermolysis bullosa on patients: a qualitative study","volume":"38","author":"N Sangha","year":"2021","journal-title":"Pediatric dermatology"},{"issue":"3","key":"pone.0316791.ref021","doi-asserted-by":"crossref","first-page":"574","DOI":"10.1111\/bjd.18128","article-title":"Clinical practice guidelines for laboratory diagnosis of epidermolysis bullosa","volume":"182","author":"C Has","year":"2019","journal-title":"The British journal of dermatology"},{"issue":"4","key":"pone.0316791.ref022","doi-asserted-by":"crossref","first-page":"620","DOI":"10.1111\/bjd.20809","article-title":"Recommendations on pregnancy, childbirth and aftercare in epidermolysis bullosa: a consensus\u2010based guideline","volume":"186","author":"D Greenblatt","year":"2022","journal-title":"British Journal of Dermatology"},{"key":"pone.0316791.ref023","article-title":"Economic burden of epidermolysis bullosa disease in Iran","volume":"35","author":"SF Forghani","year":"2021","journal-title":"Medical Journal of the Islamic Republic of Iran"},{"issue":"10","key":"pone.0316791.ref024","doi-asserted-by":"crossref","first-page":"590","DOI":"10.2471\/BLT.22.287816","article-title":"Digitalization of routine health information systems: Bangladesh, Indonesia, Pakistan","volume":"100","author":"T Tamrat","year":"2022","journal-title":"Bull World Health Organ"},{"key":"pone.0316791.ref025","doi-asserted-by":"crossref","first-page":"e44641","DOI":"10.2196\/44641","article-title":"The Minimum Data Set for Rare Diseases: Systematic Review","volume":"25","author":"FA Bernardi","year":"2023","journal-title":"Journal of Medical Internet Research"},{"key":"pone.0316791.ref026","doi-asserted-by":"crossref","first-page":"563","DOI":"10.2147\/CEOR.S369553","article-title":"Digital disruption and big data in healthcare-opportunities and challenges","author":"M El Khatib","year":"2022","journal-title":"ClinicoEconomics and Outcomes Research"},{"key":"pone.0316791.ref027","doi-asserted-by":"crossref","first-page":"102287","DOI":"10.1016\/j.ijinfomgt.2020.102287","article-title":"Information technology solutions, challenges, and suggestions for tackling the COVID-19 pandemic","volume":"57","author":"W He","year":"2021","journal-title":"International journal of information management"},{"issue":"5","key":"pone.0316791.ref028","doi-asserted-by":"crossref","first-page":"843","DOI":"10.1111\/bjd.20958","article-title":"The epidemiology of epidermolysis bullosa in England and Wales: data from the national epidermolysis bullosa database","volume":"186","author":"G Petrof","year":"2022","journal-title":"British Journal of Dermatology"},{"key":"pone.0316791.ref029","doi-asserted-by":"crossref","first-page":"171","DOI":"10.30699\/fhi.v12i0.511","article-title":"A comparative study of minimum data set of speech therapy: A systematic literature review","volume":"12","author":"K Kimiafar","year":"2023","journal-title":"Frontiers in Health Informatics"},{"issue":"2","key":"pone.0316791.ref030","article-title":"A Comparative Study Of The Athlete Health Records\u2019 Minimum Data Set In Selected Countries And Presenting A Model For Iran","volume":"8","author":"R Safdari","year":"2014","journal-title":"Payavard Salamat"},{"issue":"11","key":"pone.0316791.ref031","doi-asserted-by":"crossref","first-page":"1231","DOI":"10.1001\/jamadermatol.2016.2473","article-title":"Epidemiology of inherited epidermolysis bullosa based on incidence and prevalence estimates from the National Epidermolysis Bullosa Registry","volume":"152","author":"J-D Fine","year":"2016","journal-title":"JAMA dermatology"},{"issue":"1","key":"pone.0316791.ref032","doi-asserted-by":"crossref","first-page":"235","DOI":"10.1186\/s13023-023-02817-z","article-title":"Itch in recessive dystrophic epidermolysis bullosa: findings of PEBLES, a prospective register study","volume":"18","author":"JE Mellerio","year":"2023","journal-title":"Orphanet Journal of Rare Diseases"},{"key":"pone.0316791.ref033","doi-asserted-by":"crossref","first-page":"1469","DOI":"10.1007\/s13555-021-00578-w","article-title":"Review of the latest methods of epidermolysis bullosa and other chronic wounds treatment including BIOOPA dressing","volume":"11","author":"M Nita","year":"2021","journal-title":"Dermatology and Therapy"},{"issue":"6","key":"pone.0316791.ref034","first-page":"635","article-title":"Epidemiology of epidermolysis bullosa in the antipodes: the Australasian Epidermolysis Bullosa Registry with a focus on Herlitz junctional epidermolysis bullosa","volume":"146","author":"YC Kho","year":"2010","journal-title":"Archives of dermatology"},{"key":"pone.0316791.ref035","doi-asserted-by":"crossref","first-page":"105906","DOI":"10.1016\/j.ijsu.2021.105906","article-title":"The PRISMA 2020 statement: an updated guideline for reporting systematic reviews","volume":"88","author":"MJ Page","year":"2021","journal-title":"Int J Surg"},{"key":"pone.0316791.ref036","first-page":"1","article-title":"A step-by-step researcher\u2019s guide to the use of an AI-based transformer in epidemiology: an exploratory analysis of ChatGPT using the STROBE checklist for observational studies","author":"F Sanmarchi","year":"2023","journal-title":"Journal of Public Health"},{"issue":"16","key":"pone.0316791.ref037","doi-asserted-by":"crossref","first-page":"1614","DOI":"10.1001\/jama.2021.18236","article-title":"Strengthening the reporting of observational studies in epidemiology using Mendelian randomization: the STROBE-MR statement","volume":"326","author":"VW Skrivankova","year":"2021","journal-title":"JAMA"},{"key":"pone.0316791.ref038","doi-asserted-by":"crossref","first-page":"457","DOI":"10.3389\/fpubh.2020.00457","article-title":"Delphi technique in health sciences: a map","volume":"8","author":"M Niederberger","year":"2020","journal-title":"Frontiers in public health"},{"key":"pone.0316791.ref039","unstructured":"National Health System. Epidermolysis Bullosa 2022. Available from: https:\/\/www.nhs.uk\/conditions\/epidermolysis-bullosa\/."},{"key":"pone.0316791.ref040","unstructured":"American Academy of Dermatology Association. Epidermolysis Bullosa: Overview 2022. Available from: https:\/\/www.aad.org\/public\/diseases\/a-z\/epidermolysis-bullosa-overview."},{"key":"pone.0316791.ref041","unstructured":"National Organization for Rare Disorders. Epidermolysis Bullosa 2022. Available from: https:\/\/rarediseases.org\/rare-diseases\/epidermolysis-bullosa\/."},{"key":"pone.0316791.ref042","unstructured":"Debra of American. EB in Depth 2022. Available from: https:\/\/www.debra.org\/about-eb\/eb-depth."},{"issue":"1","key":"pone.0316791.ref043","first-page":"1","article-title":"A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa","volume":"16","author":"JY Tang","year":"2021","journal-title":"Orphanet J Rare Dis"},{"issue":"2","key":"pone.0316791.ref044","first-page":"183","article-title":"A Framework for Neonatal Prematurity Information System Development Based on a Systematic Review on Current Registries: An Original Research","volume":"14","author":"S Pahlevanynejad","year":"2024","journal-title":"Journal of Biomedical Physics & Engineering"},{"issue":"2","key":"pone.0316791.ref045","first-page":"473","article-title":"Minimum data set for a poisoning registry: a systematic review","volume":"20","author":"A Sabahi","year":"2021","journal-title":"Iranian journal of pharmaceutical research: IJPR"},{"issue":"2","key":"pone.0316791.ref046","first-page":"343","article-title":"Development of a National Consensus Minimum Data Set for the diagnosis and treatment of oral Cancer: towards Precision Management","volume":"13","author":"N Akbari","year":"2022","journal-title":"Middle East Journal of Cancer"},{"issue":"2","key":"pone.0316791.ref047","doi-asserted-by":"crossref","first-page":"254","DOI":"10.1016\/j.ajo.2004.03.034","article-title":"Eye involvement in inherited epidermolysis bullosa: experience of the National Epidermolysis Bullosa Registry","volume":"138","author":"J-D Fine","year":"2004","journal-title":"American journal of ophthalmology"},{"issue":"9","key":"pone.0316791.ref048","doi-asserted-by":"crossref","first-page":"1652","DOI":"10.1097\/MLG.0b013e318093ed8e","article-title":"Tracheolaryngeal complications of inherited epidermolysis bullosa: cumulative experience of the national epidermolysis bullosa registry","volume":"117","author":"JD Fine","year":"2007","journal-title":"The Laryngoscope"},{"issue":"12","key":"pone.0316791.ref049","doi-asserted-by":"crossref","first-page":"2349","DOI":"10.1111\/jdv.17629","article-title":"Practical management of epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases","volume":"35","author":"C Has","year":"2021","journal-title":"Journal of the European Academy of Dermatology and Venereology"},{"issue":"12","key":"pone.0316791.ref050","doi-asserted-by":"crossref","first-page":"2815","DOI":"10.1038\/jid.2008.143","article-title":"Immunofluorescence analysis of villous trophoblasts: a tool for prenatal diagnosis of inherited epidermolysis bullosa with pyloric atresia","volume":"128","author":"M D\u2019alessio","year":"2008","journal-title":"Journal of investigative dermatology"},{"issue":"4","key":"pone.0316791.ref051","doi-asserted-by":"crossref","first-page":"467","DOI":"10.1080\/14728214.2020.1839049","article-title":"Emerging drugs for the treatment of epidermolysis bullosa","volume":"25","author":"M Titeux","year":"2020","journal-title":"Expert Opin Emerg Drugs"},{"issue":"11","key":"pone.0316791.ref052","doi-asserted-by":"crossref","first-page":"1341","DOI":"10.1016\/0022-3468(91)90616-2","article-title":"Congenital pyloric atresia and junctional epidermolysis bullosa: a report of long-term survival and a review of the literature","volume":"26","author":"A Hayashi","year":"1991","journal-title":"Journal of pediatric surgery"},{"issue":"2","key":"pone.0316791.ref053","doi-asserted-by":"crossref","first-page":"402","DOI":"10.1111\/jdv.18637","article-title":"Epidemiology of inherited epidermolysis bullosa in Germany","volume":"37","author":"C Has","year":"2023","journal-title":"Journal of the European Academy of Dermatology and Venereology"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0316791","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,7]],"date-time":"2025-01-07T18:34:46Z","timestamp":1736274886000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0316791"}},"subtitle":[],"editor":[{"given":"Bibi Razieh","family":"Hosseini Farash","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2025,1,7]]},"references-count":53,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1,7]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0316791","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,7]]}}}