This study aims to better understand pancreatic neuroendocrine tumors (tumors that start in the hormone-producing cells of the pancreas) and cystic lesions (fluid-filled sacs) in people with von Hippel-Lindau (VHL) disease. VHL is a genetic condition that can cause tumors in various organs, including the pancreas. Researchers want to learn how these pancreatic issues develop and change over time. They are also testing if a special type of scan, called 68-Gallium DOTATATE PET/CT, can help detect these tumors more effectively. You may be able to join if you are 12 years or older, have VHL, and have at least one pancreatic issue seen on an imaging scan. The study will track the natural and clinical histories of these pancreatic conditions over 15 years.

Study design

This is an interventional study with a planned enrollment of 740 participants. The study is designed to comprehensively evaluate the natural history of VHL pancreatic neuroendocrine tumors and cystic lesions.

What's involved

Participants will have their medical records and imaging studies screened. They will also receive yearly 68-Gallium DOTATATE PET/CT research scans.

Compensation

Not stated in the trial record.

Follow-up

Participants will be followed for 15 years to characterize the natural and clinical histories of VHL pancreatic neuroendocrine tumors and cystic lesions.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.