This spring, FSHD Europe and FSHD researchers from across Europe, including the UK, organised two workshops to help establish a European FSHD Trial Network.
The primary goals of the network are to connect clinicians involved in the care of people with FSHD in all European countries and increase the trial capacity in Europe. This will allow more centres to participate in upcoming trials and help make new treatments more widely accessible to patients.
What were the workshops about?
At the workshops, participants discussed a number of topics, including:
- the establishment of a European FSHD Trial Network
- how to harmonise criteria for clinical and genetic diagnosis, for registries and outcome measures
- how to create an exchange of clinical experience and genetic reference material
- how to bring Europe on a par with the USA in trial-readiness for FSHD.
Who will lead the network and what will it do?
Dr Nicol Voermans (Radboud University Medical Centre in The Netherlands) will chair the network, with Dr Pascal Laforet (Pitié-Salpêtrière Hospital, France) as vice chair. Professors George Padberg and Baziel van Engelen (also from Radboud University) will act as advisors to help co-ordinate the project.
The founders of the FSHD European Trial Network intend to create working groups focusing on clinical outcome measures, biomarkers and imaging. The network will also promote future European collaborations and will work with other existing working groups (for example, the FSHD Clinical Trial Research Network), and institutions such as TREAT-NMD, the European Research Network EURO-NMD, and the FSHD Society in the USA.
How is MDUK involved?
MDUK funds the UK FSHD Registry in Newcastle, whose staff took part in the workshops. In addition, MDUK supports FSHD Europe, and our Director of Research and Innovation, Dr Kate Adcock, attended the second of the workshop discussions. She says,
It is great to see researchers and clinicians from across Europe come together to strengthen their collaborations. We anticipate that this network will enhance the research and clinical trial capacity for FSHD, bringing hope to many in our community.”