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Recruiting NCT04064307
Myotubular and Centronuclear Myopathy Patient Registry
Trial Parameters
Condition Myotubular Myopathy
Sponsor Newcastle-upon-Tyne Hospitals NHS Trust
Study Type OBSERVATIONAL
Phase N/A
Enrollment 500
Sex ALL
Min Age N/A
Max Age N/A
Start Date 2013-03-26
Completion 2025-05
Brief Summary
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.
Eligibility Criteria
Inclusion Criteria: * 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. Exclusion Criteria: \- None