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
