Status:

RECRUITING

Natural History of Familial Carcinoid Tumor

Lead Sponsor:

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Conditions:

Carcinoid

Eligibility:

All Genders

18-100 years

Brief Summary

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 ...

Detailed Description

Study Description: This study is designed as a prospective evaluation for diagnostic screening, genotyping and natural history of participants belonging to kindreds with familial carcinoid tumor. Ob...

Eligibility Criteria

Inclusion

  • 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:
  • 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.
  • Any condition which, in the opinion of the investigator, would make it unsafe to participate or would prohibit completion of the protocol.
  • Inability to provide informed consent (Arm 1 only)
  • Pregnant or breastfeeding (Arm 1 only)

Exclusion

    Key Trial Info

    Start Date :

    August 25 2008

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    Estimated Enrollment :

    1600 Patients enrolled

    Trial Details

    Trial ID

    NCT00646022

    Start Date

    August 25 2008

    Last Update

    January 9 2026

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    National Institutes of Health Clinical Center

    Bethesda, Maryland, United States, 20892