2023

Team Star up/Set up

  • Aug: Glasgow joins as observation site
  • December: FSHD UK Charity setup

Clinical Trial Readiness

  • Fulcrum P3 REACH and Roche Manoeuvre Clinical Trials start at 2 sites: UCL and Newcastle
  • MOVE+ agreed & planned for Sheffield + 2 additional Sites : Salford and SGS London

Research Team Network

  • November – First meeting of FSHD UK Research and Clinicians to work collaboratively

Stakeholder Engagement

  • Meet with MHRA/Attend Monthly Meetings (ad-hoc)

International Collaboration

  • May: FSHD UK becomes global task force member of Project Mercury .
  • Aug-Dec : GAP analysis for UK Mercury work
  • June: FSHD UK clinical network update presented at IRC (poster)
  • CTRN Support MOVE+ at 3 Sites in UK

Patient Engagement

  • November: Patient Engagement @ Site initiative at RJAH Oswestry

Cost of FSHD

  • November: Patient Engagement @ Site initiative at RJAH Oswestry