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| 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