X-linked myotubular myopathy
Other Names for this Disease
- X-linked centronuclear myopathy
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- ClinicalTrials.gov lists trials that are studying or have studied X-linked myotubular myopathy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Congenital Muscle Disease International Registry was created by leaders in the congenital muscular dystrophy (CMD) community in an effort to consolidate information on those affected with Congenital Muscle Disease into a single data repository. The purpose of this registry is to enable research and clinical trials leading to future treatments and cures. To learn more about this registry or to create a registry profile, please click here.
- The International Family Registry for Centronuclear and Myotubular Myopathies was created by the Joshua Frase Foundation. The purpose of this registry is to allow researchers to better understand the disorder and locate subjects for clinical trials. For more information or to review frequently asked questions, please click here.
- The Myotubular and Centronuclear Myopathy Patient Registry is an international database specific to patients with myotubular and centronuclear myopathy. It is managed from the UK and operated by the Myotubular Trust. The registry has been developed in partnership with TREAT-NMD and with a number of leading neuromuscular researchers.