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

No abstract


Eva W.H. Korte, Phyllis I. Spuls, Peter C. van den Akker, Dimitra Kiritsi, Martin Laimer, Anna M.G. Pasmooij, Rainer Riedl, Elizabeth Vroom, Verena Wally, Tobias Welponer, and Maria C. Bolling


Journal: British Journal of Dermatology
Pages: -
Year: 2023
DOI: 10.1093/bjd/ljad361

Further Study Information

Current Stage: Completed
Funding source(s): this research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Health Area

Disease Category: Genetic disorders, Skin

Disease Name: Epidermolysis bullosa

Target Population

Age Range: 0 - 100

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Clinical experts
- Other
- Patient/ support group representatives
- Regulatory agency representatives
- Researchers

Study Type

- COS methods research


- Semi structured discussion

To address these ultimate goals, the first international stakeholder meeting of working towards harmonization of outcomes in EB took place virtually on 12 April 2023, and
was organized by the founders of Core Outcome Sets for Epidermolysis Bullosa (COSEB), the COS initiative for EB. The aims of this kick-off meeting were to apprise stakeholders of the current state of outcome measurement in EB and engage them in a global consensus initiative of working towards COSs for the different EB types. A total of 104 participants from 24 countries attended the meeting, representing multiple continents and stakeholder roles, including patient representatives, researchers, clinicians, regulators and industry.