Tubular aggregate myopathy
Other Names for this Disease
- Myopathy, tubular aggregate
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Currently, we are unaware of any targeted therapies for tubular aggregate myopathy. There is very limited information in the medical literature regarding the treatment of this condition. Supportive therapies may be recommended depending on the severity of symptoms and associated complications. High dose steroids were reported to be effective in one case.
Last updated: 8/15/2014
- Gilchrist JM, Ambler M, Agatiello P. Steroid-responsive tubular aggregate myopathy. Muscle Nerve. 1991 Mar;14(3):233-6; http://www.ncbi.nlm.nih.gov/pubmed/2041544. Accessed 10/26/2011.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
- The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. There is a study titled Study of Inherited Neurological Disorders which may be of interest to you. To find this trial, click on the link above.
- ClinicalTrials.gov lists trials that are studying or have studied Tubular aggregate myopathy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.