The Myotubular and Centronuclear Myopathy Patient Registry

The Myotubular and Centronuclear Myopathy Patient Registry

The MTM and CNM Patient Registry is an international database that collects information on all patients with an MTM or CNM diagnosis which has been confirmed via genetic testing or muscle biopsy. The registry also collects female carriers of x-linked MTM, especially if they have manifesting symptoms.

The registry will:

  • Help identify patients for relevant clinical trials as they become available
  • Encourage further research into MTM and CNM
  • Provide researchers with specific patient information to support their research
  • Assist doctors and other health professionals by providing them with up-to-date information on managing MTM and CNM, to help them deliver better standards of care for their patients.

Address
The John Walton Muscular Dystrophy Research Centre
Institute of Genetic Medicine Newcastle
University International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom

Email

Website www.mtmcnmregistry.org

Call +441912418640