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Disease Profile
Carcinoid syndrome
Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
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Age of onset
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ICD-10
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Inheritance
Autosomal dominant A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease.
Autosomal recessive Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype.
X-linked
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
Mitochondrial or multigenic Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Not applicable
Other names (AKA)
Carcinoid tumor syndrome
Categories
Rare Cancers
Summary
Carcinoid
Treatment
FDA-Approved Treatments
The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.
- Octreotide(Brand name: Sandostatin LAR) Manufactured by Novartis Pharmaceuticals Corporation
FDA-approved indication: Reduction of growthhormone and IGF-1 (somatomedin C) in acromegaly.
National Library of Medicine Drug Information Portal
Medline Plus Health Information - Telotristat etiprate(Brand name: Xermelo) Manufactured by Lexicon Pharmaceuticals, Inc
FDA-approved indication: Treatment of carcinoidsyndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy.
National Library of Medicine Drug Information Portal
Organizations
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Organizations Supporting this Disease
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Carcinoid Cancer Foundation
118 N. Bedford Road, Suite 100
Mt. Kisco, NY 10549-2555
Toll-free: 1-888-722-3132
Telephone: +1-914-683-1001
Fax: +1-914-683-5919
Website: https://www.carcinoid.org/ -
Carcinoid NeuroEndocrine Tumour Society Canada (CNETS Canada)
1608 Blakely Drive
Cornwall, Ontario, K6J 5P4 Canada
Toll-free: 1-844-628-6788
Telephone: +1-416-628-3189
E-mail: [email protected], [email protected]
Website: https://cnetscanada.org/ -
CarcinoidSyndrome.org
Website: https://www.carcinoidsyndrome.org/
Online contact form: https://www.carcinoidsyndrome.org/contact-us/ -
Neuroendocrine Cancer Awareness Network (NCAN)
3074 Brookchase Blvd
Fort Mill, SC 29707
Telephone: 866-850-9555
E-mail: [email protected], [email protected]
Website: https://www.netcancerawareness.org/ -
Neuroendocrine Tumor Research Foundation (NETRF)
321 Columbus Avenue, Suite 5R
Boston, MA 02116
Telephone: +1-617-946-1780
E-mail: [email protected]
Website: https://netrf.org/ -
North American Neuroendocrine Tumor Society (NANETS)
136 Everett Road
Albany, NY 12205
Telephone: (650) 762-6387
E-mail: [email protected]
Website: https://nanets.net/ -
The Healing NET Foundation
200 Hill Avenue
Suite 4
Nashville, TN 37210
Telephone: 615-3696463
E-mail: [email protected]
Website: https://www.thehealingnet.org/
Learn more
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Where to Start
- Mayo Clinic has an information page on Carcinoid syndrome.
- MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
- The Merck Manual provides information on this condition for patients and caregivers.
- The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.
- The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
In-Depth Information
- Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
- The Merck Manual for health care professionals provides information on Carcinoid syndrome.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Carcinoid syndrome. Click on the link to view a sample search on this topic.
References
- Carcinoid syndrome. MedlinePlus. August 2014; https://www.nlm.nih.gov/medlineplus/ency/article/000347.htm.
- Mayo Clinic Staff. Carcinoid Syndrome. Mayo Clinic. July 2015; https://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/definition/con-20027127.
- Stephen E Goldfinger, MD; Jonathan R Strosberg, MD. Clinical features of the carcinoid syndrome. UpToDate. July 2015; Accessed 9/25/2015.