The UK Myotonic Dystrophy Patient Registry

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

There are currently 822 patients registered in this database.

The registry is funded by the Muscular Dystrophy UK and Myotonic Dystrophy Support Group with support from the 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 Myotonic Dystrophy Support Group

Affiliated to:

TREAT-NMD MRC Center for Neuromuscular Diseases