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!

 IMG_0895  This is the registry for all patients with RYR 1 centronuclear myopathy
 IMG_0893  The Myotubular Trust from the UK offers a registry for all patients with CNM. It also involves a medical questionnaire.
 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.