Family study aims to unlock secrets of rare gut cancer
NCT ID NCT00646022
First seen Jun 27, 2026 · Last updated Sep 17, 2026 · Updated 17 times
Summary
This study looks at families where multiple members have had small bowel carcinoid tumors, a rare and slow-growing cancer. Researchers want to learn how the disease develops, improve early detection, and find the genes that may cause it. Participants, including those with and without the disease, undergo medical tests every three years.
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Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 1,600 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Aug 2008
- Lead sponsor
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A government research agency
The lead sponsor is the US National Institutes of Health.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Community sample
- Ages
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18 to 100 years
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
* 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)
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- New scan could spot hidden tumors more accurately
- New blood test registry aims to improve neuroendocrine tumor care
- New radioactive drug aims to fight gut tumors that resist standard therapy
- New pill aims to tame flushing and diarrhea in rare cancer syndrome
- Radioactive drug takes aim at Hard-to-Treat tumors
- New pill could ease carcinoid syndrome Flare-Ups