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Family study aims to unlock secrets of rare gut cancer

NCT ID NCT00646022

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,600 people

The number the study aims to enrol. It can still change while the study runs.

Started

Aug 2008

Lead sponsor

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

18 to 100 years

Sex

Anyone

Healthy volunteers

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

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.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. 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

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

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