About 50 participants took part in a hybrid working group meeting in December 2023

The COSEB (Core Outcome Sets for Epidermolysis Bullosa) workshop was hold as a hybrid meeting In Amsterdam, The Netherlands on December 15th 2023 and organized by the COSEB Steering committee and DEBRAs of Austria, France, Ireland, Spain, and the United Kingdom. The goal of COSEB initiative is to establish consensus-based core outcome sets for the major EB types (EB simplex, junctional EB, and dystrophic EB) by identifying the most critical outcome domains (the “what” to measure) and corresponding outcome measurement instruments (the “how” to measure). Such core sets should be used and reported consistently across clinical trials, thereby facilitating accurate comparison and pooling of data to expedite therapy development.

Funded by the European Joint Programme for Rare Diseases (EJP-RD), the workshop aimed to foster collaboration among key stakeholders in EB research to address challenges concerning outcome measurement in EB.

Following an intensive literature search, the group compiled a list of over 1,000 clinical outcomes measures previously used for clinical EB studies. These different measures will be standardized in future and a catalogue of clinical outomes made available to clinicians in the form of the core outcome set. In the future, this COS (core outcome set) will be used in all clinical trials and reported in a standardised manner to enable precise comparison and data consolidation to accelerate therapy development.

Further News article related to COSEB.