Crohn's disease

Genetic and Rare Diseases Information Center (GARD)

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* This condition is not a rare disease. It is a condition about which the GARD Information Center has received a question.

Crohn's disease *
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Crohn's disease is an inflammatory bowel disease (IBD), the general name for diseases that cause inflammation in the intestines. Common symptoms are pain in the abdomen and diarrhea. Bleeding from the rectum, weight loss, joint pain, skin problems and fever may also occur. Other problems can include intestinal blockage and malnutrition. It can occur in people of all age groups but is most often diagnosed in young adults. Crohn's disease seems to run in some families.^[1]

More about Crohn's disease

References

Crohn's disease. National Digestive Diseases Information Clearinghouse (NIDDC). 2006 Available at: http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/index.htm. Accessed July 29, 2010.

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.

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For more information about Crohn's disease click on the boxes below:

More Detailed Information	Organizations	Medical Products	Services	Clinical Trials & Research


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 UC and Crohn's, a Web site for kids and teens with ulcerative colitis or Crohn's disease sponsored by the Crohn's & Colitis Foundation of America (CCFA). Genetics Home Reference (GHR) contains information on Crohn's disease. Click on the link to go to GHR and review the information. MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information. Medscape Reference 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 Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information. 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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Crohn's disease. 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 Crohn's disease. Click on the link to view a sample search on this topic.

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
- UC and Crohn's, a Web site for kids and teens with ulcerative colitis or Crohn's disease sponsored by the Crohn's & Colitis Foundation of America (CCFA).
- Genetics Home Reference (GHR) contains information on Crohn's disease. Click on the link to go to GHR and review the information.
- MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
- Medscape Reference 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 Merck Manuals Online Medical Library provides information on this condition. Click on the link to view the information.
- 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 Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Crohn's disease. 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 Crohn's disease. Click on the link to view a sample search on this topic.

Disease-Specific Organizations \| Umbrella Organizations \| Social Networking Websites
Organizations (Found 7 resources) Groups providing a wide range of services, supportive resources, and information. Disease-Specific Organizations Crohn's & Colitis Foundation of America 386 Park Avenue South, 17th Floor New York, NY 10016–8804 Toll-free: 1–800–932–2423 E-mail: info@ccfa.org Web site: http://www.ccfa.org 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/ Social Networking Websites DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story. Madisons Foundation P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/ 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.

Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites

Organizations (Found 7 resources)
Groups providing a wide range of services, supportive resources, and information.

Disease-Specific Organizations
- Crohn's & Colitis Foundation of America
  386 Park Avenue South, 17th Floor
  New York, NY 10016–8804
  Toll-free: 1–800–932–2423
  E-mail: info@ccfa.org
  Web site: http://www.ccfa.org
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/
Social Networking Websites
- DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
- Madisons Foundation
  P.O. Box 241956
  Los Angeles, CA 90024
  Telephone: 310-264-0826
  Fax: 310-264-4766
  E-mail: getinfo@madisonsfoundation.org
  Web site: http://www.madisonsfoundation.org/
- 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.

Medical Products (Found 1 resource)

U.S. Food and Drug Administration

The Office of Orphan Products Development (OOPD)

The medications listed in the table below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search all FDA approved drugs, visit Drugs@FDA You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.

Generic Name	Trade Name (Manufacturer Name)	Indication	Resources
Infliximab	Remicade® (Centocor Ortho Biotech Inc.)	For reducing signs and symptoms and inducing and maintaining clinical remission in pediatric patients with moderately to severely active Crohn's disease who have had an inadequate response to conventional therapy	Drug Information Portal

Ask-an-Expert \| Testing \| Parent Resources
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. Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more. Ask-an-Expert The Crohn's and Colitis Foundation of America's Information Resource Center (IRC) provides accurate, current, disease-related information to the public, health care professionals, patients and their families. Contact the IRC to understand diagnosis, treatment, and living with Crohn's disease and ulcerative colitis. IRC information specialists are master's level health professionals. They are available Monday through Friday, 9 a.m. to 5 p.m. Eastern Time. Call toll-free 1-888.MY.GUT.PAIN or use the IRC contact form. 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. Parent Resources The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.

Ask-an-Expert | Testing | Parent Resources

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.

- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
Ask-an-Expert
- The Crohn's and Colitis Foundation of America's Information Resource Center (IRC) provides accurate, current, disease-related information to the public, health care professionals, patients and their families. Contact the IRC to understand diagnosis, treatment, and living with Crohn's disease and ulcerative colitis. IRC information specialists are master's level health professionals. They are available Monday through Friday, 9 a.m. to 5 p.m. Eastern Time. Call toll-free 1-888.MY.GUT.PAIN or use the IRC contact form.
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.
Parent Resources
- The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.


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 Crohn's disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies. NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate. Patient Registry ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

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 Crohn's disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Patient Registry
- ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.