Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • TMAU
  • Fish odor syndrome
  • Fish malodor syndrome

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
  1. 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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A list of questions from the public on rare and/or genetic diseases that have been answered by the Genetic and Rare Disease Information Center. Click on each question to find the answer.

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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.
        • 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.
        • 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.
        • 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.
        • 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.
        • 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
        • Trimethylaminuria Midwest Region Foundation
          12537 Hardy Street
          Overland Park, Kansas 66213
          Contact: Cheryl Fields, MBA
          Telephone: 913-906-9496
          Email: emporia962000@yahoo.com
        • 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.
        • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
      • 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.
        • 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.
        • 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/
        • 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
        • 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
        • 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.

      • 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.



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