New scan could spot hidden tumors in rare genetic disease
NCT ID NCT07171905
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study tests a special PET scan that uses a radioactive tracer to find tumors in people with Von Hippel-Lindau (VHL) disease, a genetic condition that causes tumors to grow. About 38 adults with VHL will receive one dose of the tracer and then have a PET/CT scan. The goal is to see if this scan can detect tumors more accurately than standard MRI or surgery results, and to explore if it could guide future treatments.
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Study facts
What this study's own registry entry says, in plain language.
- Phase
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Phase 2
Tests whether the treatment actually works, and watches for side effects, in a larger group.
- Participants
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About 38 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Feb 2026
- Expected to finish
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Dec 2026
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
- Ages
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18 years and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * Voluntarily given informed consent * Age ≥18 years old * Performance Status ECOG/WHO score 0-2 * For females of reproductive potential, negative pregnancy test and use of highly effective contraception for 30 days following IMP administration * For males of reproductive potential, use of highly effective contraception for 30 days following IMP administration. And, for the primary cohort: * Diagnosis of VHL disease requiring surveillance following confirmation of pathogenic variant at genetic test Alternatively, for the secondary cohort: \- Clinical and/or pathological diagnosis of hemangioblastoma, pheochromocytoma, pancreatic neuroendocrine tumor or clear cell renal cell carcinoma requiring surgery. Exclusion Criteria: * Performance Status ECOG/WHO score \>2 * Women who are pregnant or breastfeeding or are planning pregnancy during the study * Men who are planning fatherhood during the study * Exposure to any murine or chimeric antibodies within 5 years prior to the planned IMP administration * Exposure to any experimental diagnostic or therapeutic drug within 30 days from the planned IMP administration * Surgery, biopsy, ablative procedure, radiotherapy or any other local treatment for any primary tumor within 4 weeks prior to the planned IMP administration * Exposure to any systemic agent within 4 weeks prior to the planned IMP administration or in case of continuing adverse effects with grade \>1 from such therapy * Current exposure to systemic agents or scheduled therapy in the next 6 months following the planned IMP administration * Serious non-malignant disease (e.g. psychiatric, infectious, autoimmune or metabolic) that may interfere with the objectives of the study or within the safety of compliance of the subjects as judged by the Investigator * Known hypersensitivity to \[89Zr\]Zr-DFO-Girentuximab or DFO (Desferrioxamine) * Severe chronic kidney disease with glomerular filtration rate ≤ 30 mL/min/1.73m2 * Other vulnerable categories than rare disease (e.g, being in detention)
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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IRCCS Ospedale San Raffaele
RECRUITINGMilan, Italia, 20132, Italy
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