Evaluating the natural history of familial carcinoid tumors

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study focuses on families with a history of small bowel carcinoid tumors to understand the natural progression of the disease. It aims to improve early detection methods for at-risk individuals who do not yet have the disease and to identify potential genetic factors contributing to tumor development. Participants will undergo various diagnostic screenings, including imaging and biochemical tests, and provide samples for genetic analysis. The study will also evaluate the effectiveness of different diagnostic modalities in detecting carcinoid tumors.

Why it matters

Who can join: the full rules

* 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)

Where it's running

• National Institutes of Health Clinical Center
  Bethesda, Maryland, United States Recruiting

Study contacts

• Principal investigator: Stephen A Wank, M.D. — National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
• Study coordinator: Joanne Forbes, C.R.N.P.
• Email: forbesjo@mail.nih.gov
• Phone: (301) 443-9557

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.