EVENTS

COSEB consortium members are invited to the COSEB Satellite Meeting on Wednesday October 16, 2024, from 17:00 to 19:30 CEST. This in-person meeting will take place in Vienna, Austria, as a pre-conference event to the EB Clinet conference. A digital option will also be available for those who cannot attend in person.

To register, please fill out the invitation survey via the link below.

What is a COS?

A core outcome set, or COS, is an agreed-upon set for what (outcome domains) and how (outcome measurement instruments) to measure in clinical trials for a specific condition. It ensures consistent measurement using high-quality instruments, thereby improving data pooling and strengthening the evidence for informed clinical decisions. Incorporating patient input from the start, a COS ensures that measurements are relevant and meaningful to them. Ultimately, a COS can enhance the efficacy of EB therapy development.

COSEB Consortium

The COSEB initiative was launched in April 2023, with the participation of over 100 EB community members worldwide. Since then, a steering committee, advisory panel and two working groups (one for EB simplex and one for dystrophic EB) have been formed as part of the COSEB consortium. These working groups started their activities following the first COSEB workshop in December 2023. All members have submitted conflicts of interest forms to ensure transparency regarding potential conflicts.

Currently, the COSEB consortium comprises 64 members and continues to welcome new members globally. If you are interested in joining the consortium, you can send an email to coseb@umcg.nl.