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
- 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.