Actively Recruiting

All Genders
NCT04064307

Myotubular and Centronuclear Myopathy Patient Registry

Led by Newcastle-upon-Tyne Hospitals NHS Trust · Updated on 2025-04-09

500

Participants Needed

1

Research Sites

631 weeks

Total Duration

On this page

Sponsors

N

Newcastle-upon-Tyne Hospitals NHS Trust

Lead Sponsor

M

Myotubular Trust

Collaborating Sponsor

AI-Summary

What this Trial Is About

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.

CONDITIONS

Official Title

Myotubular and Centronuclear Myopathy Patient Registry

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Patients with a myotubular myopathy or centronuclear myopathy diagnosis confirmed by genetic testing or muscle biopsy
  • Carrier females of X-linked myotubular myopathy especially if they have symptoms
  • Deceased patients with a confirmed diagnosis
Not Eligible

You will not qualify if you...

  • None

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 1 location

1

Newcastle University

Newcastle upon Tyne, Tyne and Wear, United Kingdom, NE1 3BZ

Actively Recruiting

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Research Team

J

Julie Bohill

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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