Team Start Up/Set Up
- August: Sheffield joins FSHD UK
Clinical Trial Readiness
- January: FSHD UK In-Clinic Assessments launched with training for all 5 sites Clinical Therapists.
- 2 Natural History study (ReSolve (UCL) and MOVE (Sheffield)
Research Team Network
- March: CDA for Research Team started
Stakeholder Engagement
- Meet with MHRA/Attend Monthly Meetings (ad-hoc)
Internation Collaboration
- June: FSHD Society Patient Connect : FSHD UK presents success of our model, team structure and ways of working
- RB becomes member of TreatNMD FSHD Data-Group
- RB joint-patient rep on FSHD International Standards of Care
- RB attends ECN – MRI Working Group
Patient Engagement
- March: Launch Logo to support FSHD Europe Survey
- November: launch of Patient Engagement @ Site initiative at SGS London