1st FSHD European Trial Network workshop:Working towards trial readiness across Europe

•The FSHD European Trial Network (FSHD ETN) will have an open membership. •There will be four working groups (WG) on clinical and genetic diagnosis (WG 1), clinical outcome measures (WG2), biomarkers (WG 3), and imaging outcome measures (WG4). •Network members will be appointed to reach out to countries not yet connected and to collaborate with the other organizations mentioned above, including the FSHD Clinical Trial Research Network (CTRN). •Network members will contribute to the patient expectations survey FSHD Europe is currently performing. •The network members will promote the use of agreed FSHD Core dataset across all stakeholder groups and registries, with support of TREAT-NMD.