Registries are important to identify and count patients around the world with CNM. They are also fundamental to support research!
|This is the registry for all patients with RYR 1 centronuclear myopathy|
|The Myotubular Trust from the UK offers a registry for all patients with CNM. It also involves a medical questionnaire.|
|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.|