Patient registries

Patient registries allow large groups of people to be contacted quickly and efficiently, when trials such as OPTIMSITIC become available. They also provide a link to the research community through newsletters and websites.  National registries all operate slightly differently please use the details below to find out more information.

 

The Netherlands

There is currently a registry including for myotonic dystrophy in the Netherlands (CRAMP: computer registry of all myopathies and polyneuropathies Neuromuscul Disord. 2007 Jan; 17(1):33-7.

If you would like to know how you can be part of OPTIMISTIC or for other information click here.

 

Germany

This is a self-report registry, where you enter your details online.

Website: www.dm-registry.org/de

Email: de(@)dm-registry(.)org

 

France

This is a doctor led registry please contact Prof Bassez for more information.

Email: guillaume.bassez(@)hmn.aphp(.)fr

 

United Kingdom

This is a self-report registry, where you enter your details online.

Website: www.dm-registry.org/uk

Email: myotonicdystrophyregistry(@)treat-nmd(.)eu

 

If you are outside of the nations listed above there may still be a registry available for you. A full list of patient registries for myotonic dystrophy can be found on the TREAT-NMD website