Gastrointestinal Stromal Tumors

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Genetic and Rare Diseases Information Center (GARD)

Gastrointestinal Stromal Sarcoma
GIST

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Gastrointestinal Stromal Tumors
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Gastrointestinal stromal tumors are a type of soft tissue sarcoma (tumor) that usually begins in cells in the wall of the stomach, intestines, or rectum. These tumors may be noncancerous or cancerous. They can affect adults, adolescents, or children. It is estimated that around 5,000 new cases of gastrointestinal stromal tumors are diagnosed in the United States each year.

More about Gastrointestinal Stromal Tumors

References

General Information About Adult Soft Tissue Sarcoma. National Cancer Institute. September 10, 2009 Available at: http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page1. Accessed April 27,2010.

Questions & Answers (Found 1 Question)

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.

I was recently diagnosed with a gastrointestinal stromal tumor. The tumor was surgically removed. My doctor gave me a 28% chance for recurrence. What information is available regarding recurrence risks for gastrointestinal stromal tumors? Where can I find studies which discuss these risks? ( Click here for answer)

For more information about Gastrointestinal Stromal Tumors click on the boxes below:

More Detailed Information	Organizations	Medical Products	Services	Scientific Conferences	Clinical Trials & Research

General \| Basic Information \| Other Links \| Insurance Issues
More Detailed Information (Found 9 resources) Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer General Genetics Home Reference (GHR) contains information on Gastrointestinal Stromal Tumors. Click on the link to go to GHR and review the information. Pediatric GIST.org provides medical information and builds an international support network for those with pediatric and wild-type gastrointestinal stromal tumors and funds research to find a cure for this cancer. The Global GIST Network is a directory of resources available to people with Gastrointestinal Stromal Tumors and their families. This directory serves to help people throughout the world find local resources and support. 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 Gastrointestinal Stromal Tumors. 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 Gastrointestinal Stromal Tumors. Click on the link to view a sample search on this topic. Basic Information The American Cancer Society (ACS) has developed a detailed guide on GIST. To access this guide, visit the ACS link. Other Links The GIST News.org Web page provides up-to-date information about the latest news related to GIST. Click on the link above to view this resource. Insurance Issues The Social Security Administration (SSA) created the Compassionate Allowance Initiative to speed up the processing of disability claims for applicants with certain conditions. Click on the link to view the Compassionate Allowance information for this condition. More information about applying for Social Security disability benefits is available online. Link: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022963

General | Basic Information | Other Links | Insurance Issues

More Detailed Information (Found 9 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates. Disclaimer

General
- Genetics Home Reference (GHR) contains information on Gastrointestinal Stromal Tumors. Click on the link to go to GHR and review the information.
- Pediatric GIST.org provides medical information and builds an international support network for those with pediatric and wild-type gastrointestinal stromal tumors and funds research to find a cure for this cancer.
- The Global GIST Network is a directory of resources available to people with Gastrointestinal Stromal Tumors and their families. This directory serves to help people throughout the world find local resources and support.
- 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 Gastrointestinal Stromal Tumors. 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 Gastrointestinal Stromal Tumors. Click on the link to view a sample search on this topic.
Basic Information
- The American Cancer Society (ACS) has developed a detailed guide on GIST. To access this guide, visit the ACS link.
Other Links
- The GIST News.org Web page provides up-to-date information about the latest news related to GIST. Click on the link above to view this resource.
Insurance Issues
- The Social Security Administration (SSA) created the Compassionate Allowance Initiative to speed up the processing of disability claims for applicants with certain conditions. Click on the link to view the Compassionate Allowance information for this condition. More information about applying for Social Security disability benefits is available online.
  Link: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022963

Organizations Providing General Support \| Social Networking Websites
Organizations (Found 8 resources) Groups providing a wide range of services, supportive resources, and information. Disclaimer GIST Cancer Research Fund 55 Sawmill Rd. New City, NY 10956 Telephone: 845-634-6060 or 845-634-1174 Online e-mail form: http://www.gistinfo.org/about/ Web site: http://www.gistinfo.org/ The Life Raft Group 40 Galesi Drive, Ste. 19 Wayne, NJ 07470 Phone: 973-837-9092 Fax: 973-837-9095 Web site: www.liferaftgroup.org Organizations Providing General Support 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. The Life Raft Group is an organization that provides support, information and assistance to people with Gastrointestinal Stromal Tumors and their families. Click on the Life Raft Group to view a list of their member’s blogs or to start your own. 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/ RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support | Social Networking Websites

Organizations (Found 8 resources)
Groups providing a wide range of services, supportive resources, and information. Disclaimer

- GIST Cancer Research Fund
  55 Sawmill Rd.
  New City, NY 10956
  Telephone: 845-634-6060 or 845-634-1174
  Online e-mail form: http://www.gistinfo.org/about/
  Web site: http://www.gistinfo.org/
- The Life Raft Group
  40 Galesi Drive, Ste. 19
  Wayne, NJ 07470
  Phone: 973-837-9092
  Fax: 973-837-9095
  Web site: www.liferaftgroup.org
Organizations Providing General Support
- 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.
- The Life Raft Group is an organization that provides support, information and assistance to people with Gastrointestinal Stromal Tumors and their families. Click on the Life Raft Group to view a list of their member’s blogs or to start your own.
- 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/
- RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Medical Products (Found 2 resources)
Disclaimer

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
Imatinib mesylate	Gleevec® (Novartis Pharmaceuticals Corp.)	Treatment of patients with Kit (CD117) positive unresectable and/or metastatic malignant gastrointestinal stromal tumors (GIST)	Drug Information Portal
Pazopanib	Votrient (GlaxoSmithKline)	Advanced soft tissue sarcoma (STS) who have received prior chemotherapy.	Drug Information Portal MedlinePlus

Healthcare Professional Online Directory \| 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. Disclaimer 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. Healthcare Professional Online Directory The Global GIST Network has a tool for finding local gastrointestinal stromal tumor specialists. Click on the link above to search for specialists near you. Testing The Genetic Testing Registry (GTR) provides information about the genetic tests for this condition. The intended audience for the GTR is health care providers and researchers. Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional. 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.

Healthcare Professional Online Directory | 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. Disclaimer

- 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.
Healthcare Professional Online Directory
- The Global GIST Network has a tool for finding local gastrointestinal stromal tumor specialists. Click on the link above to search for specialists near you.
Testing
- The Genetic Testing Registry (GTR) provides information about the genetic tests for this condition. The intended audience for the GTR is health care providers and researchers. Patients and consumers with specific questions about a genetic test should contact a health care provider or a genetics professional.
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.


Scientific Conferences (Found 3 resources) Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer Past Conferences RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012 Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases. Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010 Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts. VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010 Location: Palais Rouge Convention Center, Palermo, Buenos Aires Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.

Scientific Conferences (Found 3 resources)
Resources where you can find information on completed and upcoming scientific conferences and programs. Disclaimer

Past Conferences
- RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
  Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
  Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
- Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010
  Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
- VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
  Location: Palais Rouge Convention Center, Palermo, Buenos Aires
  Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.


Clinical Trials & Research (Found 4 resources) Resources where you may find research studies and clinical trials. Disclaimer ClinicalTrials.gov lists trials that are studying or have studied Gastrointestinal Stromal Tumors. 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 The Life Raft Group’s Patient Registry and Tissue Bank helps advance research on this rare cancer and identify critical areas that are not currently being addressed. Click on the links above to learn more about this registry and tissue bank. 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 Advancing Translational Sciences.

Clinical Trials & Research (Found 4 resources)
Resources where you may find research studies and clinical trials. Disclaimer

- ClinicalTrials.gov lists trials that are studying or have studied Gastrointestinal Stromal Tumors. 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
- The Life Raft Group’s Patient Registry and Tissue Bank helps advance research on this rare cancer and identify critical areas that are not currently being addressed. Click on the links above to learn more about this registry and tissue bank.
- 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 Advancing Translational Sciences.