UK FSHD patient Registry
|Sponsor / Funder||Muscular Dystrophy Campaign and TREAT-NMD Alliance|
|CI||Professor Hanns Lochmüller|
This is a national registry for all patients affected by facioscapulohumeral dystrophy (FSHD) living in the UK. It is a patient driven online registry launched in May 2013.
The registry collects a dataset in line with an international agreement. Patients fill research questionnaires collecting information about pain, quality of life and scapular fixation.
To facilitate the planning, design and recruitment of clinical research.