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Carcinoid tumor
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A carcinoid tumor is a rare, slow-growing cancer that usually starts in the lining of the digestive tract (appendix, stomach, small intestine, colon, rectum) or in the lungs but may occur elsewhere.[1][2] Because carcinoid tumors grow slowly and don't produce symptoms in the early stages, affected individuals may have the tumor for years before being diagnosed. In later stages the tumor sometimes produces hormones that can cause carcinoid syndrome. The syndrome causes flushing of the face and upper chest, diarrhea, and trouble breathing. Surgery is the main treatment for a carcinoid tumor. If it does not spread to other parts of the body, surgery can typically cure the cancer.[1]


References
  1. Carcinoid Tumors. MedlinePlus. 2009 Available at: http://www.nlm.nih.gov/medlineplus/carcinoidtumors.html. Accessed October 4, 2009.
  2. Carcinoid tumors. MayoClinic.com. 2008 Available at: http://mayoclinic.com/print/carcinoid-tumors/DS00834/DSECTION=all&METHOD=print. Accessed October 4, 2009.
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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 Carcinoid tumor click on the boxes below:
 More Detailed Information (Found 10 resources)
 
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.

  • General

    • The American Cancer Society provides detailed guides on lung and gastrointestinal carcinoid tumors. Click on the above links to access this information.
    • Cancer.Net, a resource from the American Society of Clinical Oncology, provides information about carcinoid tumors. Click on the above link to access this 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 National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.  Click on the link to view information on this topic. 
    • The National Cancer Institute (CIS) provides the most current information on cancer for patients, health professionals, and the general public. You can reach them by calling toll-free at 1-800-422-6237 or by visiting their Web site.
    • The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Carcinoid tumor. 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 Carcinoid tumor. Click on the link to view a sample search on this topic.
    • The Carcinoid Cancer Foundation, Inc. has an information page on carcinoid tumors and related neuroendocrine tumors. Click on Carcinoid Cancer Foundation, Inc. to view the information page.
 Organizations (Found 9 resources)
 Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites
Groups providing a wide range of services, supportive resources, and information.

  • Disease-Specific Organizations

  • Umbrella Organizations

  • 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)
 


 Services (Found 2 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.

  • 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 4 resources)
 Upcoming Conferences | Past Conferences
Resources where you can find information on completed and upcoming scientific conferences and programs.

  • Upcoming 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; Stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases
  • Past Conferences

    • 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.
    • NCI Summit on Carcinoids and Neuroendocrine Tumors, September 12, 2007 - September 13, 2007
      Description: The goals of this summit were to assess the current status of neuroendocrine tumor biology, diagnosis, and treatment and to develop a comprehensive set of recommendations that address the major barriers to early diagnosis and treatment. There are plans to submit a synopsis of this summit and the list of recommendations for publication in a cancer journal and to members of the U.S. Congress. It was anticipated that this summit would increase general awareness of this disease, stimulate scientific interest in this under-represented area, and potentially open up new avenues of funding.
 Clinical Trials & Research (Found 4 resources)
 
Resources where you may find research studies and clinical trials.

    • ClinicalTrials.gov lists trials that are studying or have studied Carcinoid tumor. 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.
    • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the link and enter the disease name in the "Terms Search" box. Then click "Submit Query".
      Link: http://projectreporter.nih.gov/reporter.cfm
  • 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.

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