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The Myotubular and Centronuclear Myopathy Patient Registry (also referred to as the 'MTM and CNM Registry') is an international, patient-reported database specific to these conditions.
More details and online registration are available at www.mtmcnmregistry.org.
Full description
The Myotubular and Centronuclear Myopathy (MTM & CNM) Patient Registry is managed and operated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, in partnership with the Myotubular Trust, and is part of the TREAT-NMD Neuromuscular Network. 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.
Participants register online and must provide consent before accessing the registry questionnaire. The clinical data and genetic or biopsy reports are provided by the participants and their doctors.
The MTM & CNM Registry aims to:
The investigators welcome the registration of:
This is an online registry and is hosted on the RDRF (Rare Disease Registry Framework) by Murdoch University.
More details and online registration are available at www.mtmcnmregistry.org.
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Jo Bullivant
Data sourced from clinicaltrials.gov
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