Towards a roadmap for COSEB: the next steps in harmonization of outcomes for epidermolysis bullosa-Reference-Cited by-同舟云学术

Towards a roadmap for COSEB: the next steps in harmonization of outcomes for epidermolysis bullosa

Published:2024-06-12 Issue:3 Volume:191 Page:463-465
ISSN:0007-0963
Container-title:British Journal of Dermatology
language:en
Short-container-title:

Author:

Korte Eva W H¹^ORCID,Pasmooij Anna M G¹²³^ORCID,Bolling Maria C¹^ORCID,Hickey Sinéad⁴,Hussain Sagair⁵,Kiritsi Dimitra⁶⁷^ORCID,Kottner Jan⁸^ORCID,Prinsen Cecilia A C⁹^ORCID,Sauvestre Angélique¹⁰,Sendin Gaston¹¹^ORCID,Spuls Phyllis I¹²^ORCID,Tarrats Núria¹³^ORCID,Wally Verena¹⁴^ORCID,Welponer Tobias¹⁴^ORCID,Laimer Martin¹⁴^ORCID,van den Akker Peter C¹⁵^ORCID, ,Bardhan Ajoy,Bataille Pauline,Bodemer Christine,Bolling Marieke,Bruckner Anna,Chiaverini Christine,Clemett Victoria,Collins Caroline,Colmant Caroline,De Rosa Laura,Duipmans José,Ebens Christen,Fernandez María Florencia,Gorell Emily,Guez Sophie,Has Cristina,Hickey Sinéad,Hsu Chao-Kai,Hussain Sagair,Jain Ritu,Kenny Tom,Kern Johannes S,Khanna Divya,Kiritsi Dimitra,Kitzmüller Sophie,Korte Eva,Kottner Jan,Laimer Martin,Lara-Corrales Irene,Lee Michelle,Li Wei,Lospalluti Lucia,Marinkovich M Peter,Martinez Anna,Mellerio Jemima,Moss Celia,Mullins Olivia,Murrell Dédée,Ott Hagen,Palisson Francis,Paller Amy,Pasmooij Marjon,Petrof Gabriela,Pope Elena,Prinsen Cecilia,Salamon Gudrun,Salas-Alanis Julio,Salavastru Carmen,Sauvestre Angélique,Scherer Sabine,Schräder Nicholas,Sendin Gaston,Sprecher Eli,Spreitzer Corina,Spuls Phyllis,Tarrats Núria,van den Akker Peter,Wally Verena,Welponer Tobias,Wertheim-Tysarowska Katarzyna,Zahn Tobias

Affiliation:

1. Department of Dermatology, UMCG Center of Expertise for Blistering Diseases, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands

2. Dutch Medicines Evaluation Board , Utrecht , the Netherlands

3. Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences (UIPS), Utrecht University , Utrecht , The Netherlands

4. DEBRA Ireland , Dublin , Ireland

5. DEBRA UK , Bracknell , UK

6. Department of Dermatology, Medical Center, Faculty of Medicine, University of Freiburg , Freiburg , Germany

7. First Department of Dermatology, Faculty of Medicine, Aristotle University of Thessaloniki , Thessaloniki , Greece

8. Charité-Universitätsmedizin Berlin, Institute of Clinical Nursing Science , Berlin , Germany

9. CHORD COUSIN Collaboration, Department of Dermatology, Amsterdam Public Health, Infection and Immunology , AUMC, Location AMC, University of Amsterdam, Amsterdam , the Netherlands

10. DEBRA France , Marseille , France

11. DEBRA Austria , Vienna , Austria

12. Department of Dermatology, Amsterdam Public Health, Infection and Immunology, AUMC, Location AMC, University of Amsterdam , Amsterdam , the Netherlands

13. DEBRA Spain , Marbella , Spain

14. Department of Dermatology and Allergology and EB House Austria, University Hospital of the Paracelsus Medical University , Salzburg , Austria

15. Department of Genetics, UMCG Center of Expertise for Blistering Diseases, University of Groningen, University Medical Center Groningen , Groningen , the Netherlands

Abstract

The COSEB initiative aims for standardized and uniform measurement by developing core outcome sets for epidermolysis bullosa. This report describes the COSEB workshop organized in December 2023, which led to a broad stakeholder consensus-based roadmap. Moreover, it highlights novel features of COSEB, including the pro-active engagement of stakeholders from the very beginning and the appointment of a multi-stakeholder advisory panel.

Funder

European Joint Programme for Rare Diseases

Publisher

Oxford University Press (OUP)

Link

https://academic.oup.com/bjd/advance-article-pdf/doi/10.1093/bjd/ljae200/58211466/ljae200.pdf

Reference8 articles.

1. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility;Has;Br J Dermatol,2020

2. Heterogeneity of reported outcomes in epidermolysis bullosa clinical research: a scoping review as a first step towards outcome harmonization;Korte;Br J Dermatol,2023

3. Harmonization of outcomes in epidermolysis bullosa: report of the Core Outcome Sets for Epidermolysis Bullosa (COSEB) kick-off meeting;Korte;Br J Dermatol,2024

4. The COMET Handbook: version 1.0;Williamson;Trials,2017

5. Novel insights into the epidemiology of epidermolysis bullosa (EB) from the Dutch EB Registry: EB more common than previously assumed?;Baardman;J Eur Acad Dermatol Venereol,2021