Trimethylaminuria
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Trimethylaminuria is a metabolic disorder in which an individual is not able to break down trimethylamine into smaller compounds. Trimethylamine is the compound that gives fish their fishy odor. Trimethylaminuria, has been around for centuries, but has only gained scientific recognition and support in the past 30 years.[1]
References
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Learning about Trimethylaminuria. National Human Genome Research Institute Web site. February 3, 2009 Available at: http://www.genome.gov/11508983 . Accessed February 11, 2009.
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- More Detailed Information (Found: 5 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
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Genetics Home Reference (GHR) contains a condition summary on Trimethylaminuria. Click on the link to go to GHR and review this summary.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Trimethylaminuria. Click on the link to go to OMIM and review these resources.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Trimethylaminuria. Click on the link to view a sample search on this topic.
- Management Guidelines
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GeneReviews provides a comprehensive review describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on GeneReviews to view the article on Trimethylaminuria.
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The United States Department of Agriculture has a document that lists the choline content of common foods. Click on the link above to view this document.
- Support Groups (Found: 6 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
- Disease-Specific Organizations
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Trimethylaminuria Foundation
P.O. Box 3361
Grand Central Station
New York, NY 10163-3361
Telephone: 212-300-4168
Fax or alternate phone: 917-640-7308
E-mail: theTFnetwk@aol.com
Hours of operation: Tu, Th, Fr until 7 pm and Saturdays until 4 pm
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Trimethylaminuria Midwest Region Foundation
12537 Hardy Street
Overland Park, Kansas 66213
Contact: Cheryl Fields, MBA
Telephone: 913-906-9496
Email: emporia962000@yahoo.com
- Live Chat
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Clinical Trials & Research (Found: 1 Resource)
Resources where you may find research studies and clinical trials
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There is a study, entitled "Studies of Children with Metabolic and Other Genetic Diseases,'' which is evaluating individuals with known or suspected genetic or metabolic diseases. Despite its title, this study is enrolling individuals of all ages. Since this is a very broad study, individuals with this condition may be eligible to participate. To read about this study online, visit the link above. After you click on the study, review its 'eligibility' criteria to determine its appropriateness.
- Services (Found: 5 Resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories
- Testing
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The GeneTests web site lists laboratories performing clinical diagnostic testing. The laboratory testing for TMAU is located in Canada, however, they accept samples from people in the United States. To find out more about this laboratory, click here or select the 'Laboratory Directory' icon at the top the home page. Use 'trimethylaminuria' as your disease search term and click on either the 'Research' or 'Testing' icon for the laboratory's contact information. Again, please note that this laboratory does not accept direct contact from patients; therefore, you will have to work in conjunction with a health care provider or genetics professional. Either of these professionals can contact the laboratory to learn more about the clinical diagnostic testing the laboratory offers for trimethylaminuria.
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The Human Biomolecular Research Institute can assist in the diagnostic testing of patients who may have trimethylaminuria.
The Human Biomolecular Research Institute
5310 Eastgate Mall
San Diego, CA 92121
Tel: (858) 458-9305
Fax: (858) 458-9311
Email: rhandley@hbri.org
Web site: http://www.hbri.org/
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The Monell Chemical Senses Center is able to assist in the diagnostic testing of patients who may have trimethylaminuria. Monell is a non-profit, basic scientific research center focused on understanding the senses of taste and smell. They are not a medical clinic. If you are interested in more information, you can send an e-mail to bodyodorinfo@monell.org. The Information Center provides the names of these centers for informational purposes only, not as an endorsement of the institutions' products or services.
Monell Chemical Senses Center
University of Pennsylvania
Telephone: (267) 519-4700
Contact: George Preti, PhD at preti@monell.org
Web site: http://www.monell.org/tmau_h.htm
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University of Colorado Health Science Center is able to assist in the diagnostic testing of patients who may have trimethylaminuria. Please note that some laboratories do not accept direct contact from patients. Therefore, we recommend that you work with a medical or genetics professional to contact the laboratories for further information. The Information Center provides the names of these centers for informational purposes only, not as an endorsement of the institutions' products or services.
Dr. Paul Fennessey (303) 315-7287
Contact: Dr. Susan Tjoa; (303) 315-8175 or susan.tjoa@uchsc.edu
- Genetic Services
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We recommend that you discuss this information and your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
* GeneClinics - A searchable directory of US and international genetics and prenatal diagnosis clinics. To locate genetics clinics in the United States, go to the following link and click on 'Clinic Directory' to find a genetic service close to you.
* ResourceLink - A database of genetics counseling services, searchable by location, name, institution, type of practice, or specialty. Hosted by the National Society of Genetic Counselors.
- NLM Gateway
A tool to search across multiple resources offered on the National Library of Medicine's Website
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The NLM Gateway allows users to search across multiple resources offered on the National Library of Medicine's Web site. Some of these resources may be duplicated in the list of links above. Click on the link to go to the NLM Gateway, and search by condition name.