The Myotubular and Centronuclear Myopathy Patient Registry

The Myotubular and Centronuclear Myopathy Patient Registry (‘MTM and CNM Registry’) is an international database specific to these conditions, operated by Newcastle University in the UK as part of the global TREAT-NMD Neuromuscular Network. The registry was developed in partnership with the MTM and CNM communities and is jointly funded by the Myotubular Trust, Muscular Dystrophy UK, and Astellas Pharma Inc. The registry is governed by an independent expert Steering Committee and data is managed according to GDPR requirements.

We are collecting data on individuals with myotubular and centronuclear myopathies, in order to:

• Help identify participants for clinical trials as they become available.
• Improve understanding of the prevalence and natural history of these conditions.
• Support existing research and encourage further research into myotubular and centronuclear myopathy.
• Provide doctors and other health professionals with information on managing myotubular and centronuclear myopathy, to help them deliver better standards of care for their patients.

We accept registrations of:

Individuals with a diagnosis of myotubular myopathy or centronuclear myopathy (preferably confirmed via genetic testing or muscle biopsy).

Carrier females of x-linked myotubular myopathy, especially those with myotubular myopathy type symptoms.

Any individual who is deceased, but who had a confirmed diagnosis.

If these categories don’t apply to you, but you would like to receive updates and newsletters from the registry, please email mtmcnmregistry@newcastle.ac.uk and ask to be added to our general mailing list.