Status:
RECRUITING
Myotubular and Centronuclear Myopathy Patient Registry
Lead Sponsor:
Newcastle-upon-Tyne Hospitals NHS Trust
Collaborating Sponsors:
Myotubular Trust
Muscular Dystrophy UK
Conditions:
Myotubular Myopathy
Myotubular Myopathy 1
Eligibility:
All Genders
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 a...
Detailed 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 M...
Eligibility Criteria
Inclusion
- 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
- \- None
Key Trial Info
Start Date :
March 26 2013
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
May 1 2025
Estimated Enrollment :
500 Patients enrolled
Trial Details
Trial ID
NCT04064307
Start Date
March 26 2013
End Date
May 1 2025
Last Update
April 9 2025
Active Locations (1)
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1
Newcastle University
Newcastle upon Tyne, Tyne and Wear, United Kingdom, NE1 3BZ