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Myotubular and Centronuclear Myopathy Patient Registry

Useful resources

There are several other registries relevant to myotubular and centronuclear myopathy which also have global coverage, and it can be hard to know which one to join. This choice is up to you; and if you are eligible, you can join as many registries as you like. We all work together to achieve our goals.

Whether you join one registry or all of them, it is very important that you complete all the information fully and keep it up to date when prompted. This helps us to understand your data correctly and avoid double-counting if we do research together in future.

You are now on the website for the Myotubular and Centronuclear Myopathy Patient Registry.

You can use the links below to learn more about the other registries available for these conditions, and whether you are eligible to join:

Resources on this website:

Resources on other websites:

Patient organisations and support groups:

Registry materials: