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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.
If these categories don’t apply to you, but you would like to receive updates and newsletters from the registry, please email firstname.lastname@example.org and ask to be added to their general mailing list.
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.