Myotubular and Centonuclear Myopathy Patient Registry

Information

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:

  • Help identify patients for relevant clinical trials as they become available
  • Encourage further research into myotubular and centronuclear myopathy
  • Provide researchers with specific patient information to support their research
  • Assist doctors and other health professionals by providing them with up-to-date information on managing myotubular and centronuclear myopathy, to help them deliver better standards of care for their patients

 

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 LocationInternational - available to Australians
Registry ParticipationVoluntary
Registry Contact

Jo Bullivant
Myotubular and Centronuclear Myopathy Patient Registry Curator

E: mtmcnmregistry@treat-nmd.eu

Adding New Patients to Registry

We welcome the registration of:

  • All patients, with a myotubular myopathy or centronuclear myopathy diagnosis, which has been confirmed via genetic testing or muscle biopsy
  • Any carrier females of x-linked myotubular myopathy, especially if they have manifested myotubular myopathy type symptoms
  • Any patient who is deceased, but who had a confirmed diagnosis

 

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

mtmcnmregistry.org

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