X-linked myotubular myopathy
Other Names for this Disease
- X-linked centronuclear myopathy
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On this page
- How to Get Involved in Research – A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease.
- 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.
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
- 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.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.