Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • Huntington's chorea
  • Huntington's disease
  • HD
Printer Friendly printer friendly version
Home > Genetic & Rare Diseases Information Center (GARD) > Huntington disease



Huntington disease
Please note that the links contained on this search results page may take you to sites outside of the NIH. (See Disclaimer under Site Policies for details.)
Huntington disease is a progressive disorder that causes brain cell (neuron) degeneration in certain areas of the brain.  This results in uncontrolled movements, loss of intellectual faculties, and emotional disturbance. The mean age of onset is 35 - 44 years and the median survival time is 15 to 18 years after onset. Huntington disease is an inherited condition, passed from parent to child through a mutation in the normal gene. Each child of a parent with Huntington disease has a 50-50 chance of inheriting the gene mutation.[1]

References
  1. Warby SC, Graham RK, Hayden MR. Huntington Disease. GeneReviews. 2007 Available at: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=huntington. Accessed July 13, 2009.

Questions & Answers (Found 3 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.
Show All Resources


For more information about Huntington disease click on the boxes below:
More Detailed Information NLM Gateway Medical Products Services Scientific Conferences Support Groups Clinical Trials & Research
 General | Management Guidelines | Selected Full-Text Journal Articles
More Detailed Information (Found 9 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates

  • General

    • MedlinePlus, a Web site designed by the National Library of Medicine Web site to help you research your health questions, provides more information about this topic. Click on the link to view this information.
    • 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 National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
    • The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Huntington disease. 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 Huntington disease. Click on the link to view a sample search on this topic.
  • Management Guidelines

    • 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 Hereditary Disease Foundation has a page that posts the Guidelines for the Molecular Genetics Predictive Test in Huntington's Disease published in the journal Neurology in 1994http://www.hdfoundation.org/html/testwfn.php
  • Selected Full-Text Journal Articles

 
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.
 
Medical Products (Found 1 resource)
 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 Division of Neurogenetics at the University of Washington is a tertiary specialty that provides clinical services to adults in the general public as well as training. They have created a booklet entitled, "Huntington Disease:Making an Informed Choice",  that can be downloaded at no charge.
    • Orphanet lists international laboratories offering diagnostic testing for this condition. Click here and scroll down the page to learn more about the processes of certification, accreditation, and external quality assessment available to these labs. Click on Orphanet to view the list.
  • 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.
 
Scientific Conferences (Found 1 resource)
Completed and upcoming scientific conferences and programs that have been sponsored by the National Institutes of Health

  • Past Conferences

    • 2009 Triplet Repeat Disorders Gordon Conference, May 31, 2009 - June 5, 2009
      Description: The top two priorities of this conference were training and the communication of cutting-edge science in the area of CAG triplet repeat disorders. The focus of this conference was on areas of rapid advancement and latest developments. Speakers were selected for their expertise, recent contributions to the field, and ability to provide lively presentations. The structured discussion leaders were instructed to focus on issues that cut across each presentation in a session.
 Umbrella Organizations | Disease-Specific Organizations | Live Chat/E-mail Lists | Parent Matching Organizations
Support Groups (Found 10 resources)
Groups providing a wide range of services, supportive resources, and information

  • Umbrella Organizations

  • Disease-Specific Organizations

    • Hereditary Disease Foundation
      3960 Broadway, 6th Floor
      New York, NY 10032
      Phone: (212) 928-212
      Fax: (212) 928-2172
      E-mail: cures@hdfoundation.org
      Web: http://www.hdfoundation.org
    • HOPES
      Huntington's Outreach Project for Education, at Stanford
      Web site: http://hopes.stanford.edu
    • Huntington Society of Canada

      151 Frederick St, Suite 400
      Kitchner, Ontario, Intl N2H 2M2
      Toll-free (In Canada): 1-800-998-7398
      Phone: 519-749-7063
      Fax: (519) 749-8965
      Email: info@huntingtonsociety.ca
      Web site: http://www.huntingtonsociety.org/

    • Huntington's Disease Society of America
      505 Eighth Ave, Suite 902
      New York, N.Y. 10018
      Telephone: (212) 242-1968
      Toll Free: (800) 345-HDSA (4372)
      E-mail: hdsainfo@hdsa.org
      Web site: http://www.hdsa.org/
    • International Huntington Association

      Callunahof 8
      Harfsen, Intl 7217 ST
      Phone: 31-573-431595
      E-mail: iha@huntington-assoc.com
      Web site: http://www.huntington-disease.org

  • 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 3 resources)
Resources where you may find research studies and clinical trials

    • ClinicalTrials.gov lists trials that are studying or have studied Huntington disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • Patient Registry

    • The National Research Roster for Huntington Disease Patients and Families (hdRoster) was established in 1979 at Indiana University. Funded by the National Institute of Neurological Disorders and Stroke, a branch of the National Institutes of Health, the Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research projects.
    • The National Research Roster for Huntington Disease Patients and Families (hdRoster) was established in 1979 at Indiana University. Funded by the National Institute of Neurological Disorders and Stroke, a branch of the National Institutes of Health, the Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research projects.

Department of Health & Human Services National Institutes of Health USA.gov - government made easy


Note: If you need help accessing information in different file formats such as PDF, MP3, see Viewers, Players, and Plug-ins.