Carcinoid tumour.
M E Caplin, J R Buscombe, A J Hilson...
https://pubmed.ncbi.nlm.nih.gov/9737302Actively Recruiting
Age: 18Years - 100Years
All Genders
ID00646022
Natural History of Familial Carcinoid Tumor Evaluating Diagnostic Screening, Genotyping, and Tumor Progression
Led by National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) · Updated on 2026-06-08
1600
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are studying families with a history of small bowel carcinoid cancer to understand how the disease develops, improve early detection, and identify genes that may cause these tumors. Familial carcinoid tumors often start in hormone-producing cells lining the small intestine or other digestive tract areas. These tumors grow slowly and can take years to cause symptoms. The study includes family members who have or are at risk for these tumors, as well as some spouses. Participants undergo medical evaluations every three years during a 3- to 5-day hospital stay. Evaluations include personal and family medical histories, physical exams, blood and urine tests, and specialized imaging like video capsule endoscopy, CT scans, PET/CT scans, and MRI to check for tumors and their spread. Tumor tissue and blood samples are collected for genetic analysis and other research. During the study, researchers monitor participants for tumor occurrence and progression using biochemical and imaging tests. They compare different imaging methods for diagnosing and tracking tumors and study genetic factors related to the disease. If tumors are found, participants receive help to determine the best treatment. The main goal is to understand the natural history of familial carcinoid tumors and improve early diagnosis and management.
CONDITIONS
Brief Title
Natural History of Familial Carcinoid Tumor
Who Can Participate
Age: 18Years - 100Years
All Genders
Eligibility Criteria
You may qualify if you...
- Male and female subjects 18 years of age or older
- Diagnosis of small intestinal carcinoid tumor with at least one blood relative diagnosed with small intestinal, pulmonary, kidney, gastropancreatic neuroendocrine tumor, or metastatic neuroendocrine tumor of unknown primary
- Multiple synchronous primary small intestinal tumors
- No carcinoid tumor diagnosis but with at least two blood relatives with related neuroendocrine tumors or one relative with multiple small bowel tumors
- Spouses not biologically related but with offspring who are blood relatives of a participating subject
You will not qualify if you...
- Members of families with multiple endocrine neoplasia (MEN) I, MEN II, Von Hippel Lindau Syndrome, Neurofibromatosis type I or II with known genetic predisposition to non-carcinoid tumors
- Any condition deemed unsafe or prohibiting study completion by the investigator
- Inability to provide informed consent (Arm 1 only)
- Pregnant or breastfeeding (Arm 1 only)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Diagnostic Evaluation
Duration - Varies depending on individual evaluation
Participants undergo diagnostic imaging and biochemical evaluations to detect and monitor familial carcinoid tumors, including CT scans with contrast, PET/CT scans, and endoscopic procedures.
1 to 2 visits depending on cohort assignment
Long-term Monitoring
Duration - Duration of the study
Participants are observed over time to study the natural history of familial carcinoid tumors, including tumor progression, symptoms, and metabolic effects.
Periodic visits as determined by clinical evaluation
Trial Site Locations
Total: 1 location
1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892
Actively Recruiting
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Research Team
J
Joanne Forbes, C.R.N.P.
S
Stephen A Wank, M.D.
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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Published Research Related To This Trial
A 5-decade analysis of 13,715 carcinoid tumors.
Irvin M Modlin, Kevin D Lye, Mark Kidd
https://pubmed.ncbi.nlm.nih.gov/12569593Revised classification of neuroendocrine tumours of the lung, pancreas and gut.
C Capella, P U Heitz, H Höfler...
https://pubmed.ncbi.nlm.nih.gov/7697211Performance of capsule endoscopy for the detection of small intestinal neuroendocrine tumors in familial carcinoid: a prospective single-site study.
Derek Tang, Ramona Lim, Louis Korman...
https://pubmed.ncbi.nlm.nih.gov/37838323