Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • TMAU
  • Fish odor syndrome
  • Fish malodor syndrome
  • Stale fish syndrome
  • TMAuria
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Home > Genetic & Rare Diseases Information Center (GARD) > Trimethylaminuria



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.

Questions & Answers (Found 4 Questions)
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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For more information about Trimethylaminuria click on the boxes below:
More Detailed Information NLM Gateway Services Support Groups Clinical Trials & Research
 General | Management Guidelines
More Detailed Information (Found 8 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates

  • General

    • Genetics Home Reference (GHR) contains a condition summary on Trimethylaminuria. Click on the link to go to GHR and review this summary.
    • The National Human Genome Research Institute's (NHGRI) mission encompasses a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. Click on the link to view the information page on this topic.
    • 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.
    • Orphanet is a database dedicated to information on rare diseases and orphan drugs.  Access to this database is free of charge.  Click on the link to read information on this topic.
    • 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

    • 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.
    • GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
    • 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.
 
NLM Gateway (Found 1 resource)
A tool to search across multiple resources offered on the National Library of Medicine's Website

    • NLM Gateway allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.
 Testing | Genetic Services
Services (Found 4 resources)
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories

  • Testing

    • GeneTests lists laboratories offering clinical genetic testing for this condition. Clinical genetic tests are ordered to help diagnose a person or family and to aid in decisions regarding medical care or reproductive issues. Talk to your health care provider or a genetic professional to learn more about your testing options.
    • The GeneTests web site lists laboratories performing clinical diagnostic testing. The laboratories testing for TMAU are not located in the United States however, they may accept US samples. To find out more about these laboratories, 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 these laboratories may 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/TMAuria.htm
  • Genetic Services

    • 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.
 Umbrella Organizations | Disease-Specific Organizations | Live Chat/E-mail Lists | Parent Matching Organizations
Support Groups (Found 7 resources)
Groups providing a wide range of services, supportive resources, and information

  • Umbrella Organizations

  • Disease-Specific Organizations

    • 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
  • Live Chat/E-mail Lists

    • 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.
  • Parent Matching Organizations

 
Clinical Trials & Research (Found 1 resource)
Resources where you may find research studies and clinical trials

    • 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.

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