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

      Highlights

      • 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.

      Keywords

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