The Myotubular and Centronuclear Myopathy Patient Registry (also referred to as the ‘MTM and CNM Registry’) is an international database specific to our condition. It is managed from the UK and operated by TREAT-NMD at Newcastle University, in partnership with the Myotubular Trust. The registry has been developed in partnership with a number of leading neuromuscular researchers.
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
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.
Any patient who wishes to receive information only.
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.