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!
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This is the registry for all patients with RYR 1 centronuclear myopathy |
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The Myotubular Trust from the UK offers a registry for all patients with CNM. It also involves a medical questionnaire. |
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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. |
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The Joshus Frase Foundation offers a registry for all CNM patients that offers demographic and genetic Information. |