{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T17:02:41Z","timestamp":1784566961580,"version":"3.55.0"},"reference-count":31,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T00:00:00Z","timestamp":1772668800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100006668","name":"Oregon Health and Science University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006668","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,7,17]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Pyoderma gangrenosum (PG) is a rare, painful neutrophilic dermatosis with a profound impact on patient quality of life. Its management is hindered by a lack of approved therapies, limited clinical trials, and low-quality evidence. The rarity of the disease and funding constraints have impeded research progress and the development of standardized outcome measures. Patient data registries offer a promising solution to these challenges, providing essential infrastructure to improve the generation of evidence and clinical care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To develop a consensus-based minimum dataset for an international treatment effectiveness registry for PG, informed by real-world clinical data.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An initial list of candidate domain items was generated from a systematic literature review conducted according to a previously published protocol. An international, multistakeholder panel of 45 participants \u2013 including patients with PG, clinicians, researchers, methodologists\u00a0and industry representatives \u2013 was convened from 97 invited experts. Through three rounds of modified Delphi surveys and a virtual consensus meeting, items were ranked using predefined criteria: \u2018consensus in\u2019 (\u2265 70% scoring 7\u20139 and \u2264 15% scoring 1\u20133), \u2018consensus out\u2019 (\u2265 70% scoring 1\u20133 and \u2264 15% scoring 7\u20139)\u00a0and \u2018no consensus\u2019. A final verification survey confirmed inclusion if &amp;lt; 30% of participants voted \u2018no\u2019.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>All 45 stakeholders completed all three Delphi rounds (0% dropout). Thirty-four (76%) participated in the consensus meeting, and 42 (93%) completed the final verification survey. Of 143 initial items across 24 domains, 118 items across 26 domains achieved consensus for inclusion in the minimum dataset.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This international consensus establishes a standardized framework for collecting real-world data on PG. The resulting registry will serve as a critical resource for evaluating treatment effectiveness, understanding disease progression, and improving patient outcomes. It will also support future clinical trials, guideline development, quality improvement initiatives, and global patient recruitment efforts.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/bjd\/ljag084","type":"journal-article","created":{"date-parts":[[2026,3,4]],"date-time":"2026-03-04T12:46:30Z","timestamp":1772628390000},"page":"270-279","source":"Crossref","is-referenced-by-count":1,"title":["Minimum dataset for treatment effectiveness in pyoderma gangrenosum for an international registry: an international multidisciplinary eDelphi consensus"],"prefix":"10.1093","volume":"195","author":[{"given":"Olivia M","family":"Haddadin","sequence":"first","affiliation":[{"name":"School of Medicine, Oregon Health and Science University , Portland, OR ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4105-1958","authenticated-orcid":false,"given":"Michael 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University of Toronto , ON ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joachim","family":"Dissemond","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Venerology and Allergology, University of Essen , Essen ,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joao","family":"Renato V Gontijo","sequence":"additional","affiliation":[{"name":"Professor of Dermatology, Medical School of Universidade Federal de Minas Gerais , Belo Horizonte, MG ,","place":["Brazil"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philip J","family":"Hampton","sequence":"additional","affiliation":[{"name":"Department of Dermatology, The Royal Victoria Infirmary, Newcastle Hospitals NHS\u00a0Trust,\u00a0Newcastle upon Tyne ,","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert I","family":"Kelly","sequence":"additional","affiliation":[{"name":"Department of Dermatology, St Vincent\u2019s Hospital , Melbourne, VIC ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angelo V","family":"Marzano","sequence":"additional","affiliation":[{"name":"Dermatology Unit, Fondazione IRCCS Ca\u2019 Granda Ospedale Maggiore Policlinico , Milan ,","place":["Italy"]},{"name":"Department of Pathophysiology and Transplantation, Universit\u00e0 degli Studi di Milano , Milan ,","place":["Italy"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yayoi","family":"Tada","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Teikyo University School of Medicine , Tokyo ,","place":["Japan"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise A A","family":"Gerbens","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Amsterdam University Medical Center, Academic Medical Center, Amsterdam Public Health, Infection and Immunity, University of Amsterdam , 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