Myotubular and Centronuclear Myopathy Patient Registry
Status: Recruiting
Location: See location...
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• 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.
Locations
Other Locations
United Kingdom
Newcastle University
RECRUITING
Newcastle Upon Tyne
Contact Information
Primary
Julie Bohill
julie.bohill@newcastle.ac.uk
0044 191 241 8640
Time Frame
Start Date: 2013-03-26
Estimated Completion Date: 2025-05
Participants
Target number of participants: 500
Related Therapeutic Areas
Sponsors
Collaborators: Astellas Pharma Inc, Astellas Gene Therapies, Muscular Dystrophy UK, Myotubular Trust
Leads: Newcastle-upon-Tyne Hospitals NHS Trust