Myotubular and Centronuclear Myopathy Patient Registry
Recruiting
Observational Study
Myotubular Myopathy
Myotubular Myopathy 1
Myotubular (Centronuclear) Myopathy
Centronuclear Myopathy
Centronuclear Myopathy, X-Linked
X-linked Myotubular Myopathy
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 500 (estimated)
- Sponsor
- Newcastle-upon-Tyne Hospitals NHS Trust · Other
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About This Trial
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.
Trial Locations
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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 wh…
Contacts