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.
Patients with a myotubular myopathy or centronuclear myopathy diagnosis, which has been confirmed via genetic testing or muscle biopsy.
Any carrier females of x-linked myotubular myopathy, especially if they have manifested myotubular myopathy type symptoms.
Any patient who is deceased, but who had a confirmed diagnosis.
None
Newcastle-upon-Tyne Hospitals NHS Trust
Lead sponsor
Myotubular Trust
Collaborator
Muscular Dystrophy UK
Collaborator
Astellas Gene Therapies
Collaborator
Astellas Pharma Inc
Collaborator