NCT04074135

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

Recruiting now Phase 2 Last updated 24 February 2026

What this trial tests

Phase 2 trial testing 68-Gallium DOTATATE in VHL Pancreatic Neuroendocrine Tumors in 740 participants. Currently enrolling.

Timeline

2 June 2020

Primary endpoint
30 January 2036

1 July 2036

Quick facts

Lead sponsor	National Cancer Institute (NCI)
Phase	Phase 2
Status	Recruiting now
Study type	INTERVENTIONAL
Allocation	non randomized
Design	parallel
Masking	none
Primary purpose	diagnostic
Enrollment	740
Start date	2 June 2020
Primary completion	30 January 2036
Estimated completion	1 July 2036
Sites	1 location across United States

Drugs / interventions tested

• 68-Gallium DOTATATE — full drug profile →

Conditions studied

• VHL Pancreatic Neuroendocrine Tumors — all drugs for VHL Pancreatic Neuroendocrine Tumors →
• Von Hippel-Lindau Disease — all drugs for Von Hippel-Lindau Disease →
• Neuroendocrine Tumors — all drugs for Neuroendocrine Tumors →

Sponsor

National Cancer Institute (NCI)

Who can join

12 and older, any sex, with VHL Pancreatic Neuroendocrine Tumors or Von Hippel-Lindau Disease. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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 types of symptoms they have.

Participants will have blood and urine tests

Participants will have images made of their body using one or more machines: They made have a CT or PET/CT scan in which they lie on a table that moves through a big ring. They may have an MRI in which they lie on a table that moves into a big tube. They may have an ultrasound that uses a small stick that produces sound waves to look at the body.

After the first visit, participants will be asked to return to the NIH. Some of the tests performed at the first visit will be repeated. Depending on their disease status, visits will be once a year or every 2 years for life.

Publications & conference data

No peer-reviewed publications indexed yet for this trial.