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Natural History and Management of Von Hippel-Lindau (VHL) Associated Pancreatic Neuroendocrine Tumors

RecruitingPhase 2Ages 12 Years - anyAllNational Cancer Institute (NCI)
NCT04074135 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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 complications. Researchers want to learn more about these pancreatic tumors and how to better detect them. This may help them design better future treatment and care for people with VHL disease. Objective: To better understand VHL disease that affects the pancreas and to test whether adding a certain type of scan (68-Gallium DOTATATE PET/CT) can further detect tumors. Eligibility: People ages 12 and older with VHL that causes tumors and cysts to grow in the pancreas Design: Participants will be screened with their medical records and imaging studies. Participants will have an initial evaluation: Participants will have their body examined by different doctors. This will depend on what ty

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📋 Eligibility rules (as published)
* INCLUSION CRITIERIA: 1. 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 2. 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 3. Age greater than or equal to 12 years. 4. 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.
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What it tests

  • 68-Gallium DOTATATE
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Where

1 site
National Institutes of Health Clinical Center
Bethesda, United States
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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