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.|
|This is the registry for all patients with RYR 1 centronuclear myopathy|
|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.|
|The Joshus Frase Foundation offers a registry for all CNM patients that offers demographic and genetic Information.|