Patient registry and studies

Researchers on CNM        Recent Therapies

Registries are important to identify and count patients around the world with CNM. They are also fundamental to support research!

   The Myotubular and Centronuclear Myopathy Patient Registry (also referred to as the ‘MTM and CNM Registry’) is an international database specific to these conditions. It is managed from the UK and operated by TREAT-NMD at Newcastle University, in partnership with the Myotubular Trust. A steering committee watches over the correct use of data. Our association has one seat in this steering committee. We highly recommend that each person with CNM should join this registry.
 IMG_0895  This is the registry for all patients with RYR 1 centronuclear myopathy
 IMG_0899  The CMDIR is a registry for all congenital myopathies. They also works together with the Audentes Therapeutics on their Recensus Study.
 Beggs Laboratory of the Boston Children´s Hospital  The Beggs Laboratory offers a registry to get involved in a patient study and also a female carrier study. Dr. Beggs also supports the Recensus Study of Audentes Therapeutics.
 IMG_0890  The Joshus Frase Foundation offers a registry for all CNM patients that offers demographic  and genetic Information.