Tubular aggregate myopathy
Other Names for this Disease
- Myopathy, tubular aggregate
Your QuestionWhat is tubular aggregate myopathy?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
- What is a myopathy?
- What are tubular aggregates?
- What is tubular aggregate myopathy?
- What are the symptoms of tubular aggregate myopathy?
- Are there different types of tubular aggregate myopathy?
- Do all patients with tubular aggregate myopathy have muscle pain?
- What causes tubular aggregate myopathy?
- What is the typical prognosis (chance for recovery) of people with tubular aggregate myopathy?
- Who does tubular aggregate myopathy typically affect?
- Is tubular aggregate myopathy genetic?
- How can I find a genetics professional in my area?
- Are there any clinical trials enrolling people with tubular aggregate myopathy?
Hypokalemic periodic paralysis
Facioscapulohumeral dystrophy with aminoaciduria
Caffeine or drugs such as zidovudine
The role tubular aggregates play in these diseases is unclear.
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- The National Society for Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
You can check ClinicalTrials.gov often for regular updates, using "myopathy" or "tubular aggregate myopathy" as your search term.
You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you determine if your son is eligible for any clinical trials.
Patient Recruitment and Public Liaison Office (PRPL)
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If your son is interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine.
Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
- Darier disease. Genetics Home Reference. 2008; http://ghr.nlm.nih.gov/condition=darierdisease. Accessed 8/7/2009.
- Gilchrist JM, Ambler M, Agatiello P. Steroid-responsive tubular aggregate myopathy. Muscle & Nerve. 1991;
- Kim NR, Suh YL. Tubular aggregate myopathy: A case report. J Korean Med Sci. 2003;
- Pandit L, Narayanappa G, Bhat I, Thomas V. Case study: Autosomal recessive tubular aggregate myopathy in an Indian family. European Journal of Paediatric Neurology. 2008;
- Chevessier F et al. Tthe origin of tubular aggregates in human myopathies. J Pathol. 2005;