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Hirschsprung's disease
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Q&A	More Detailed Information	Support Groups	Clinical Trials & Research	Services	NLM Gateway

How can I learn more about the pull-through operation for Hirschsprung disease? I am considering this procedure for my son.

What is Hirschsprung disease?
How can I learn more about the pull-through operation for Hirschsprung disease?

What is Hirschsprung disease? (Back to Top)
Hirschsprung disease is a disease of the large intestine or colon. People with this disease do not have the nerve cells in the intestine required to expel stools from the body normally. Symptoms of Hirschsprung disease usually show up in very young children, but sometimes not until adolescence or adulthood. The symptoms may vary with age, but often involve constipation and/or obstruction of the bowel.
Last Reviewed: 9/26/2008
How can I learn more about the pull-through operation for Hirschsprung disease? (Back to Top)
For a full discussion of this procedure, its risks and benefits, we recommend that you speak with your child's healthcare provider. In the meantime, you may find the following resources to be helpful.

The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) has developed an information page on Hirschsprung disease that includes information on the pull-through operation. Click on the link below to view this information page. http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/index.htm

You can find relevant journal articles on the pull-through procedure through a service called PubMed, a searchable database of medical literature. Information on finding an article and its title, authors, and publishing details is listed here. Some articles are available as a complete document, while information on other studies is available as a summary abstract. To obtain the full article, contact a medical/university library (or your local library for interlibrary loan), or order it online using the following link. Using "Hirschsprungs[ti] pull-through" as your search term should locate articles. To narrow your search, click on the “Limits” tab under the search box and specify your criteria for locating more relevant articles. Click here to view a search. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

The National Library of Medicine (NLM) Web site has a page for locating libraries in your area that can provide direct access to these journals (print or online). The Web page also describes how you can get these articles through interlibrary loan and Loansome Doc (an NLM document-ordering service). You can access this page at the following link http://nnlm.gov/members/. You can also contact the NLM toll-free at 888-346-3656 to locate libraries in your area.

In addition, the following support organizations may be able to provide you with additional information on this topic. They may also be able to help you connect with other families with children with Hirschsprung disease.

Pull-thru Network
2312 Savoy Street
Hoover, AL 35226
Phone: 205–978–2930
E-mail: PTNmail@charter.net
Web site: http://www.pullthrunetwork.org/

International Foundation for Functional Gastrointestinal Disorders, Inc. (IFFGD)
P.O. Box 170864
Milwaukee, WI 53217–8076
Toll-free: 888-964-2001
Phone: 414-964-1799
Fax: 414-964-7176
E-mail: iffgd@iffgd.org
Web site: http://www.iffgd.org/
Last Reviewed: 9/26/2008

More Detailed Information (Found: 11 Resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates
- General
  - eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
    
    The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and health care organizations representing millions of individuals with genetic conditions. Click on the link to view information on this topic.
    
    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 Merck Manual Online Medical Library provides information on digestive tract defects. Click on Merck Manual to view the information page.
    
    MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
    
    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 Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
    
    The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Hirschsprung's 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 Hirschsprung's 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.
Support Groups (Found: 6 Resources)
Groups providing a wide range of services, supportive resources, and information
- Umbrella Organizations
  - Genetic Alliance
    4301 Connecticut Avenue NW
    Suite 404
    Washington, DC 20008-2369
    Telephone: 202-966-5557
    Fax: 202-966-8553
    E-mail: info@geneticalliance.org
    Web site: http://www.geneticalliance.org
    
    National Organization for Rare Disorders (NORD)
    55 Kenosia Avenue
    PO Box 1968
    Danbury, CT 06813-1968
    Toll-free: 1-800-999-6673 (voicemail only)
    Telephone: 203-744-0100
    TTY: 203-797-9590
    Fax: 203-798-2291
    E-mail: orphan@rarediseases.org
    Web site: http://www.rarediseases.org/
- Disease-Specific Organizations
  - Pull-thru Network
    2312 Savoy Street
    Hoover, AL 35226
    Phone: 205–978–2930
    E-mail: PTNmail@charter.net
    Web site: http://www.pullthrunetwork.org/
    
    International Foundation for Functional Gastrointestinal Disorders
    P.O. Box 170864
    Milwaukee, WI 53217
    Phone: 414-964-1799
    Toll-free: 888-964-2001
    Fax: 414-964-7176
    E-mail: iffgd@iffgd.org
    Web site: http://www.iffgd.org/
- Live Chat
  - 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.
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 Hirschsprung's disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  - The National Digestive Diseases Information Clearinghouse (NDDIC), part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), offers information on this condition. Click on the link to view information on this topic.
  - The Chakravarti Research Laboratory at Johns Hopikins University is conducting research testing on Hirschsprung Disease. You can contact the Chakravarti Research Laboratory directly to learn more.
    
    Chakravarti Research Laboratory
    Contact: Julie Albertus Muskett, MS
    Johns Hopkins University
    Baltimore, MD
    Phone: 410-502-7541
    Fax: 410-502-7544
    E-mail: jalbert3@jhmi.edu
Services (Found: 1 Resource)
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.
NLM Gateway
A tool to search across multiple resources offered on the National Library of Medicine's Website
- - 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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