Research projects and trials

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A recent audit provided evidence that there is a variation in management of myotonic dystrophy in the UK. 

Myotonic Dystrophy National Registry

In conjunction with the TREAT-NMD the Myotonic Dystrophy National Registry has been created.

A Standards of Care assessment will lead to standardisation and improvement in patient services.

Study

PHENODM1

This study of patients with myotonic dystrophy commenced in May 2015 funded by the NIHR Rare Diseases Translational Research Collaboration.