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VHL pancreatic tumors under the microscope: new scan tested

NCT ID NCT04074135

First seen Jan 12, 2026 · Last updated Jun 17, 2026 · Updated 25 times

Summary

This study follows people with von Hippel-Lindau (VHL) disease who have pancreatic tumors or cysts. The goal is to learn how these growths change over time and to see if a special type of scan (68-Gallium DOTATATE PET/CT) can find them better. Participants will have regular check-ups and imaging tests, but no treatment is given. The study aims to improve future care for VHL patients.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States

    Contact Phone: •••-•••-••••

Conditions

The condition(s) this trial relates to.

multiple endocrine neoplasia type 1 Neuroectodermal Tumors, Primitive neuroendocrine neoplasm pancreatic neoplasm pancreatic neuroendocrine tumor von Hippel-Lindau disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.