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Lookup NU author(s): Dr Philip Hampton
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© The Author(s) 2026. Published by Oxford University Press on behalf of British Association of Dermatologists. All rights reserved. Background: 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. Objectives: To develop a consensus-based minimum dataset for an international treatment effectiveness registry for PG, informed by real-world clinical data. Methods: 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 – including patients with PG, clinicians, researchers, methodologists and industry representatives – was convened from 97 invited experts. Through three rounds of modified Delphi surveys and a virtual consensus meeting, items were ranked using predefined criteria: ‘consensus in’ (≥ 70% scoring 7–9 and ≤ 15% scoring 1–3), ‘consensus out’ (≥ 70% scoring 1–3 and ≤ 15% scoring 7–9) and ‘no consensus’. A final verification survey confirmed inclusion if < 30% of participants voted ‘no’. Results: 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. Conclusions: 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.
Author(s): Haddadin OM, Jacobson ME, Becker SL, Chen D, Croitoru DO, Dissemond J, Renato V Gontijo J, Hampton PJ, Kelly RI, Marzano AV, Tada Y, Gerbens LAA, Ortega-Loayza AG
Publication type: Article
Publication status: Published
Journal: British Journal of Dermatology
Year: 2026
Volume: 195
Issue: 2
Pages: 270-279
Print publication date: 01/08/2026
Online publication date: 05/03/2026
Acceptance date: 02/03/2026
ISSN (print): 0007-0963
ISSN (electronic): 1365-2133
Publisher: Oxford University Press
URL: https://doi.org/10.1093/bjd/ljag084
DOI: 10.1093/bjd/ljag084
PubMed id: 41784109
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