💬In plain words
What the trial is, and whether it could suit you
This study will evaluate members in families with a history of small bowel carcinoid cancer to study the natural history of those family members that have the disease, determine ways to improve early detection by performing surveillance on those at risk but without disease and to identify the gene(s) that may cause the tumors. Familial carcinoid tumors usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. The tumors are slow-growing and usually take many years before they cause symptoms. It is known that these tumors occur more often in some families and are then passed from one generation to the next by inherited genes.
Members of families, including all siblings and offspring in which two or more immediate blood relatives have had small bowel carcinoid tumors are eligible for this study. In some cases unaffected spouses of fa
Sign in to get the eligibility rules as simple questions to take to your doctor.
📋 Eligibility rules (as published)
* INCLUSION CRITERIA:
There are four types of participants who will be included in this protocol as outlined below.
In order to be eligible to participate in this study, an individual must meet all of the following criteria for their group:
Group 1 (Arm 1 or Arm 2)
* Male and female subjects \>= 18 years of age
* Have a diagnosis of small intestinal carcinoid tumor
* Have at least one blood relation with a diagnosis of either small intestinal, pulmonary, kidney or gastropancreatic neuroendocrine tumor or metastatic neuroendocrine tumor of unknown primary
Group 2 (Arm 1 or Arm 2)
* Male and female subjects \>= 18 years of age
* Has multiple synchronous primary small intestinal tumors
Group 3 (Arm 1 or Arm 2)
* Male and female subjects \>=18 years of age
* Does not have a diagnosis of carcinoid tumor
* Has one of the following:
* at least two blood relatives with any combination of diagnoses of small intestinal carcinoid tumor, a pulmonary, kidney, gastropancreatic neuroendocrine tumor or metastatic neuroendocrine tumor of unknown primary OR
* has at least one blood relative with multiple, synchronous primary small bowel tumors
Group 4 (Arm 2 only)
* Male and female subjects \>= 18 years of age
* Not biologically related to the participating family but has offspring who is/are blood relative(s) of a participating subject.
EXCLUSION CRITERIA:
An individual who meets any of the following criteria will be excluded from participation in this
study:
1. Members of families with multiple endocrine neoplasia (MEN) I, MEN II or other familial tumor syndromes such as Von Hippel Lindau Syndrome and Neurofibromatosis type I and type II for which there is a known genetic predisposition to non-carcinoid tumors as well as
carcinoid tumors will be excluded from the study.
2. Any condition which, in the opinion of the investigator, would make it unsafe to participate or would prohibit completion of the protocol.
3. Inability to provide informed consent (Arm 1 only)
4. Pregnant or breastfeeding (Arm 1 only)
National Institutes of Health Clinical Center
Bethesda, United States
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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