At the 2023 World Muscle Society meeting this October, the MTM-CNM Liver Collaborative Working Group were delighted to be able to present new data from the Myotubular and Centroncular Myopathy Patient Registry. A new liver section was added to the Registry on 22nd April this year, and within 3 months 110 registry participants had completed the questionnaire. This meant that a scientific poster could be prepared in time for the World Muscle Society this October, bringing this important topic for myotubular and centronuclear myopathy to the attention of the leading scientists in our field, and the pharmaceutical and biotech companies interested in our condition.
As of October 2023, 122 registry participants have completed the liver questionnaire, and we would really like to see this number increase further. If you haven’t done so already, please sign into the Registry here to join up and/or complete the liver questionnaire which is open to everyone, whether you show symptoms or not.
The MTM-CNM Liver Collaborative Working Group is the initiative of the US patient organisation, MTM-CNM Family Connection and the Myotubular Trust, in a drive to bring together international experts in muscle and liver to develop a better understanding of possible liver challenges experienced in the condition. Erin and Mark Ward of the MTM-CNM Family Connection presented the poster at WMS on behalf of the Working Group.
