UK FSHD Patient Registry

To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD.

There are currently 1065 patients registered in this database.

The registry is funded by  Muscular Dystrophy UK with support from the John Walton Muscular Dystrophy Research Centre,  TREAT-NMD Alliance and MRC Centre for Neuromuscular Disease.

Coordinated by:

The John Walton Muscular Dystrophy Research Centre Newcastle University The Newcastle upon Tyne Hospitals NHS Foundation Trust

Funded by:

Muscular Dystrophy UK

Affiliated to:

TREAT-NMD MRC Center for Neuromuscular Diseases