The first two day workshop of the FSHD European Trial Network is in the books!May 10, 2021
FSHD Europe helped to organise the first FSHD European Trial Network online workshop on 23rd April and 7th May 2021 with the following aims:
- Establish the foundation of a European FSHD Trial Network
- Harmonise criteria for clinical and genetic diagnosis, for registries and outcome measures
- Create exchange of clinical experience and genetic reference material
- Bring Europe on a par with the USA in trial-readiness for FSHD
It is the intention of the founders of FSHD European Trial Network that the new network will continue with different working groups on clinical outcome measures, biomarkers and imaging and, and promotes future European collaborations, expands and works hand in hand with other existing work groups (FSHD CTRN) and institutions (TREAT-NMD, ERN EURO-NMD, FSHD Society).
The workshop report will be submitted to Neuromuscular Disorders.