Newsletters

You will be able to find copies of all published UK Myotonic Dystrophy Patient Registry newsletters in this section. 

Leaflets

An information leaflet has been produced to help explain what the UK Myotonic Dystrophy Patient Registry is about and how to register. You can show this to your family and friends and to your doctor if they would like more information. The leafet about the Registry is available to download here:

Leaflet

You can also find a leaflet about the benefits to joining a registry, including examples of how the registries coordinated at the John Walton Muscular Dystrophy Research Centre have been used in research and in clinical trials. The leaflet is available to download here:

Why join a patient registry?

Publications

Having attended the recent Annual Myotonic Dystrophy Foundation (now known simply as ‘Myotonic’) Conference 2019, the UK Myotonic Dystrophy Patient Registry was presented as a poster. The conference was the biggest one yet and was attended by over 160 researchers and industry representatives. There was broad coverage of the therapies in early development and lessons learned from clinical trials. It was clear that from these clinical trials, registries can be extremely useful in facilitating study recruitment.

Please find the UK Myotonic Dystrophy Patient Registry poster presented here along with all of the registry enquiries it has helped facilitate since its creation in 2012:

Poster

If you have any questions do not hesitate to contact the registry curator at myotonicdystrophyregistry@treat-nmd.eu