Myotubular and Centronuclear Myopathy Patient Registry

Recruiting now

Conditions studied: Myotubular Myopathy, Myotubular Myopathy 1, Myotubular (Centronuclear) Myopathy, Centronuclear Myopathy, Centronuclear Myopathy, X-Linked, X-linked Myotubular Myopathy

In brief

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.

Key facts

Study ID

NCT04064307

Run by

Newcastle-upon-Tyne Hospitals NHS Trust

People needed

500

Starts

2013-03-26

Expected to finish

2025-05-01

Last updated by the study team

2025-04-09

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• None

Where it is running

• Newcastle University — Newcastle upon Tyne, Tyne and Wear, United Kingdom (enrolling)

Full record on ClinicalTrials.gov

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