Get involved in research for myotubular and centronuclear myopathy

Your involvement in each area of research is critical as we prepare for clinical trials. Whether your loved one is living or deceased your involvement will make a huge contribution to the work our researchers are doing. Below we have listed all involvement pertaining to CNM/MTM along with a brief description of each.

  1. International Family Registry /global map – Where are you on the map?
  2. Beggs Lab - Help us learn more about MTM and other Centronculear myopathies.
  3. Dynacure - join ongoing Natural History Study in Centronuclear Myopathies with the Institute of Myology (France) 
  4. CMDIR Tissue Repository - Opportunities to accelerate research through tissue donation.
  5. Titin Study - An exciting opportunity at the National Institute of Health in Washington DC
  6. RECENCUS /INCEPTUS/ ASPIRO Studies  - Audentes Therapeutics studies on Myotubular Myopathy 
  7. Clinical Center Genomics Opportunity- The National Institutes of Health (NIH) has free genetic testing slots available for individuals with undiagnosed muscle conditions.  This can include people with Titin variants of unknown significance.  
  8. Register with CMDIR - You don't need genetic confirmation to register.
  9. CNM/MTM Patient Registry – international patient registry

Webinars:

The Journey to Clinical Trials - Part 1 with Alan Beggs, PhD - Feb 1st, 2014