Harmonization of outcomes in epidermolysis bullosa: report of the Core Outcome Sets for Epidermolysis Bullosa (COSEB) kick-off meeting-Reference-Cited by-同舟云学术

Harmonization of outcomes in epidermolysis bullosa: report of the Core Outcome Sets for Epidermolysis Bullosa (COSEB) kick-off meeting

Published:2023-10-04 Issue:2 Volume:190 Page:268-270
ISSN:0007-0963
Container-title:British Journal of Dermatology
language:en
Short-container-title:

Author:

Korte Eva W H¹^ORCID,Spuls Phyllis I²^ORCID,van den Akker Peter C³^ORCID,Kiritsi Dimitra⁴^ORCID,Laimer Martin⁵^ORCID,Pasmooij Anna M G¹⁶^ORCID,Riedl Rainer⁷,Vroom Elizabeth⁸^ORCID,Wally Verena⁹^ORCID,Welponer Tobias⁵^ORCID,Bolling Maria C¹^ORCID

Affiliation:

1. Department of Dermatology

2. Department of Dermatology, Amsterdam UMC, Academic Medical Center, University of Amsterdam, Amsterdam Public Health, Infection and Immunity , the Netherlands

3. Department of Genetics, Expertise Center for Blistering Diseases, University of Groningen, University Medical Centre Groningen, Groningen , the Netherlands

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

5. EB House Austria (part of the Department of Dermatology and Allergology)

6. Dutch Medicines Evaluation Board, Utrecht , the Netherlands

7. DEBRA Austria, Vienna , Austria

8. Duchenne Parent Project, World Duchenne Organization , the Netherlands

9. Research Program for Molecular Therapy of Genodermatoses (EB House Austria), University Hospital of the Paracelsus Medical University, Salzburg , Austria

Abstract

The COSEB kick-off meeting was organized in April 2023, and highlighted the stakeholder perspectives on the unmet and urgent need to work towards reasonable harmonization of outcome measurement in epidermolysis bullosa (EB) by developing core outcome sets for the different EB types. Standardized and uniform outcome assessment holds great promise to reduce selective reporting, improve the comparability and pooling of treatment outcomes, and enhance the efficacy of future research in EB.

Publisher

Oxford University Press (OUP)

Subject

Dermatology

Link

https://academic.oup.com/bjd/advance-article-pdf/doi/10.1093/bjd/ljad361/53004377/ljad361.pdf

Reference8 articles.

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

3. Meeting report: The First Global Congress on Epidermolysis Bullosa, EB2020 London: Toward treatment and cure;Mellerio;J Invest Dermatol,2020

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

5. Navigating the landscape of core outcome set development in dermatology;Prinsen;J Am Acad Dermatol,2019

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1. Towards a roadmap for COSEB: the next steps in harmonization of outcomes for epidermolysis bullosa;British Journal of Dermatology;2024-06-12