You will be able to find copies of all published UK Myotonic Dystrophy Patient Registry newsletters in this section.
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:
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:
Please find below relevant conference posters presenting the UK Myotonic Dystrophy Patient Registry
- Myotonic Dystrophy Foundation Annual Conference 2023, Washington D.C
- Neuromuscular Translational Research Conference 2023, UCL
'Identifying barriers and increasing patient enrolment in the UK Myotonic Dystrophy Patient Registry'
- 16th International Congress on Neuromuscular Diseases (ICNMD 2021)
- Annual Myotonic Dystrophy Foundation Conference 2019
If you have any questions do not hesitate to contact the registry curator at [email protected]