Queen Square Centre for Neuromuscular Diseases


UK Myotonic Dystrophy patient registry

Sponsor / Funder Myotonic Dystrophy Support Group, Muscular Dystrophy UK and TREAT-NMD Alliance
CI Professor Hanns Lochmüller
Sites Newcastle
More information

This is an online patient driven resource launched in May 2012. The registry collects a dataset in line with an international agreement.

Patients provide most of the information. Additional clinical and genetic details are provided by their neuromuscular specialist.

Primary objective

  • to facilitate the planning, design and recruitment of clinical research
  • to provide a snapshot of the myotonic dystrophy population in the UK