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Myotubular and Centronuclear Myopathy Patient Registry

NCT04064307 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 500

Last updated 2025-04-09

No results posted yet for this study

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.

Conditions

  • Myotubular Myopathy
  • Myotubular Myopathy 1
  • Myotubular (Centronuclear) Myopathy
  • Centronuclear Myopathy
  • Centronuclear Myopathy, X-Linked
  • X-linked Myotubular Myopathy

Sponsors & Collaborators

  • Myotubular Trust

    collaborator UNKNOWN

  • Muscular Dystrophy UK

    collaborator UNKNOWN

  • Astellas Gene Therapies

    collaborator INDUSTRY

  • Astellas Pharma Inc

    collaborator INDUSTRY

  • Newcastle-upon-Tyne Hospitals NHS Trust

    lead OTHER

Principal Investigators

  • Chiara Marini Bettolo · Newcastle-upon-Tyne Hospitals NHS Trust

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-03-26
Primary Completion
2025-05-31
Completion
2025-05-31

Countries

  • United Kingdom

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04064307 on ClinicalTrials.gov