The Myotubular and Centronuclear Myopathy Patient Registry has added an important new section to the Registry’s questionnaires, aimed to collect vital information about liver issues in the MTM and CNM patient population for both living and deceased patients and are inviting ALL to contribute this so that they can get a representative sample – even if you have never had any liver problems or symptoms.

They have added this section because some (but not all) people with MTM and CNM have occasionally experienced abnormal liver function blood test results. Very rarely there are more severe liver related complications. By collecting this information, it is hoped to better understand the liver in myotubular and centronuclear myopathy, to help with the day-to-day care of people with the conditions, and to improve future research and treatment development.

You can help with our understanding about the liver:

You are invited to please log in to your account as soon as possible, and complete the new section called “Liver function”.

If you are not yet registered, please select the  register option, whereafter you can complete all the questionnaires including about your liver health. You can read more about the benefits of joining a patient registry here.

If you are already registered, but think you have forgotten your password please visit: mtmcnmregistry.org and use the ‘Forgot password’ link to set a new one.

Please also check that the rest of your questionnaire responses are still accurate and that nothing is missing (particularly the genetic report).

The MTM & CNM Registry will analyse the data you provide and present it at the 28th International Annual Congress of the World Muscle Society in October 2023, as well as sharing the results with you by email.

If you have any questions, please contact the registry manager:-

Jo Bullivant
Myotubular and Centronuclear Myopathy Patient Registry
John Walton Muscular Dystrophy Research Centre
Newcastle University
Newcastle upon Tyne, NE1 3BZ

Telephone: 0191 241 8640
Email: Joanne.Bullivant@newcastle.ac.uk