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

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.