PLEASE DONATE

CLICK HERE

NEWS & UPDATES

Patient Registry


 

The Myotubular and Centronuclear Myopathy Patient Registry

The Patient Registry http://mtmcnmregistry.org/ is an international database, specific to the genes causing myotubular and centronuclear myopathy. 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, and is jointly funded by the Myotubular Trust and Muscular Dystrophy UK.

The Patient Registry:

  • Helps identify patients for relevant clinical trials as they become available
  • Encourages further research into myotubular and centronuclear myopathy
  • Provides researchers with specific patient information to support their research
  • Assists 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

The Registry welcomes:

  • 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.

If these categories don’t apply to you, but you would like to receive updates and newsletters from the registry, please email mtmcnmregistry@treat-nmd.eu and ask to be added to their general mailing list.

Join here 

The aim of the Myotubular and Centronuclear Myopathy Patient Registry is to be the most comprehensive there is for this specific condition, to give us a good insight into the numbers of people affected.

To see an overview of the registry data, please view the latest demographic information here.

Choose your language...