We are pleased to announce the establishment of the “FSHD European Trial Network”. Nicol Voermans as chair and Pascal Laforet as vice chair; George Padberg and Baziel van Engelen as advisors coordinate this project, initiated by FSHD Europe.
The primary goal of the FSHD European Trial Network is to connect the clinicians involved in care for FSHD in all European countries and increase the trial capacity in Europe allowing more centres to participate in upcoming trials and making new treatments widely accessible to patients.
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).
For more information: https://fshd-europe.info/what-is-it-about/ and https://fshd-europe.info/core-group-of-experts/. The workshop report will be submitted to Neuromuscular Disorders. You can contact Nicol Voermans if you want to join: firstname.lastname@example.org.
Published on 16 May 2021.