International Family Registry for Centronuclear and Myotubular Myopathies
Have you been diagnosed with Centronuclear (CNM) or Myotubular Myopathy (MTM)?
Welcome to the next generation of The International Family Registry for Centronuclear and Myotubular Myopathies!
We are now partnered with The NIH/NCATS GRDR® Program (Global Rare Diseases Patient Registry Data Repository) to create a next generation Centronuclear (CNM) and Myotubular Myopathy (MTM) global patient registry. The purpose of this new registry is to create an investigator-patient relationship in order to allow researchers to better understand CNM/MTM and locate subjects for clinical trials. If you or a family member are affected by CNM/MTM, please register here!
If you registered with us prior to January 1, 2016, we are asking you to please take a moment to register again to help us with this new and exciting project!
The following individuals are eligible to be registered:
- Individuals affected with Centronuclear Myopathy (CNM)
- Individuals affected with X-Linked Myotubular Myopathy (XLMTM)- an X-linked version of CNM due to a mutation of the Myotubularin (MTM1) gene
- Female carriers of XLMTM
A separate registry entry should be completed for each participant
This is a voluntary registry and registry information may be filled out by an eligible participant or their legal guardian if the participant is under the age of 18 or is unable to provide consent (participants may be living or deceased)
This information is crucial for helping us to understand the demographics of our community. If you know of anyone affected with CNM/MTM, please direct them to this website and ask them to register.
Once registered, you will receive email updates on research progress and clinical trial opportunities as they become available. Your de-identified pin will also be added to our global map upon your approval- Global conscience ushers in change, are you pinned yet?
Please follow the link below to the registry consent form to learn more about your rights as a participant and how this information is used and stored.
*** REGISTRY LINK***
Should you have any questions about the Registry and your participation, or you would like to speak to a genetic counselor, please contact the Registry Coordinator at: firstname.lastname@example.org. You may also refer to our Informed Consent FAQs
Thank you for you time and information. Alone we are rare, together we are strong!