Status:
RECRUITING
Natural History and Management of Von Hippel-Lindau (VHL) Associated Pancreatic Neuroendocrine Tumors
Lead Sponsor:
National Cancer Institute (NCI)
Conditions:
VHL Pancreatic Neuroendocrine Tumors
Von Hippel-Lindau Disease
Eligibility:
All Genders
12+ years
Phase:
PHASE2
Brief Summary
Background: People with von Hippel-Lindau (VHL) can have problems with a variety of organs, such as the pancreas. The disease can cause tumors of the pancreas. This can result in life-threatening com...
Detailed Description
Background: * Patients with the von Hippel-Lindau (VHL) familial cancer syndrome demonstrate manifestations in a variety of organs, including the pancreas. Pancreatic manifestations can range from be...
Eligibility Criteria
Inclusion
- INCLUSION CRITIERIA:
- Participants who have been diagnosed with VHL using the following criteria:
- \-- Identification of a heterozygous germline pathogenic variant in VHL by molecular genetic testing.
- or
- \-- Clinical criteria
- Participants with at least 1 pancreatic manifestation of VHL as documented on any non-invasive imaging study. These manifestations may include:
- Pancreatic cyst(s)
- Solid lesions suspicious for microcystic adenoma(s)
- Solid enhancing lesions suspicious for PNET(s)
- Any other solid lesion(s) of the pancreas
- Age greater than or equal to 12 years.
- Ability of participant to understand and the willingness to sign a written informed consent document.
- EXCLUSION CRITERIA:
- 1\. Inability of participant to undergo serial non-invasive imaging.
Exclusion
Key Trial Info
Start Date :
June 2 2020
Trial Type :
INTERVENTIONAL
Allocation :
ESTIMATED
End Date :
July 1 2036
Estimated Enrollment :
740 Patients enrolled
Trial Details
Trial ID
NCT04074135
Start Date
June 2 2020
End Date
July 1 2036
Last Update
March 13 2025
Active Locations (1)
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1
National Institutes of Health Clinical Center
Bethesda, Maryland, United States, 20892