Myotubular and Centonuclear Myopathy Patient Registry
The Myotubular and Centonuclear Myopathy Patient Registry (also referred to as the ‘MTM and CNM Registry’) is an international database specific to these conditions.
This patient registry will:
Our aim is to make our registry the most comprehensive there is for this specific condition, to give us a good insight into the numbers of people affected.
|Registry Location||International - available to Australians|
|Adding New Patients to Registry||
We welcome the registration of:
Participants can register online, and create a password-protected user-account so they can log in and view or update their details at any time. Patients under the age of 18 must be registered by a parent or legal guardian, and deceased patients can be registered by a family member. The registry is available in English, German, Spanish, Polish, Italian and French.
|Please see the website for more information|