Condition

Von Hippel-Lindau Disease clinical trials and research

• 12Clinical trials
• 32Countries

Newest Von Hippel-Lindau Disease clinical trials

All recruiting trials (12)

• CAIX-targeted 18F-T2 PET/CT imaging in solid tumors

  This study tests a CAIX-specific radioactive tracer to see if PET/CT can help visualize solid tumors and checks safety and radiation exposure in adults with certain cancers.

  Recruiting Peking University First Hospital · Beijing, Beijing Municipality · NCT07557225

• Extension program for people previously treated with belzutifan (MK-6482)

  This extension lets people with advanced solid tumors or VHL-related tumors who were already taking belzutifan in another study continue the drug so researchers can see how long they live and watch for long-term effects.

  Recruiting at 50 sites Phase 3 Merck Sharp & Dohme LLC · Boston, Massachusetts and 56 other locations · NCT07405164

• Real-world belzutifan outcomes and pharmacogenetics in von Hippel-Lindau syndrome

  This study will test belzutifan in people aged 14 and older with VHL syndrome to see how well it controls VHL-associated tumors, what side effects occur, and how genetic factors affect response.

  Recruiting Phase 2 AC Camargo Cancer Center · São Paulo, São Paulo · NCT07167329

• Registry for Rare Diseases

  This study is creating a detailed registry to collect information on rare diseases like amyloidosis and sarcoidosis to help improve how they are diagnosed and treated.

  Recruiting Hospital Italiano de Buenos Aires · Buenos Aires, Buenos Aires · NCT06573723

• Understanding genetic causes of neuroendocrine tumors in Mexican patients

  This study is trying to find out the genetic changes that cause neuroendocrine tumors in Mexican patients to help develop better treatments.

  Recruiting at 3 sites Universidad Nacional Autonoma de Mexico · Mexico City, Mexico City and 2 other locations · NCT06523582

• Analyzing genetic mutations in kidney cells of patients with Von Hippel-Lindau disease

  This study looks at whether kidney cells from people with Von Hippel-Lindau disease have more genetic changes compared to those without the condition.

  Recruiting IRCCS San Raffaele · Milan · NCT06194669

• Collecting data from patients with Von Hippel Lindau Disease

  This study is collecting information from people with Von Hippel Lindau disease to see how their specific genetic changes affect their health and treatment responses, including how they feel in their daily lives.

  Recruiting M.D. Anderson Cancer Center · Houston, Texas · NCT05955014

• Treatment of advanced tumors with belzutifan

  This study is testing a new medication called belzutifan to see if it can help people with advanced tumors related to specific conditions feel better and respond to treatment.

  Recruiting at 48 sites Phase 2 Merck Sharp & Dohme LLC · Los Angeles, California and 84 other locations · NCT04924075

• Understanding and managing pancreatic tumors in patients with Von Hippel-Lindau disease

  This study is testing how pancreatic tumors behave in people with Von Hippel-Lindau disease to improve detection and management of these tumors.

  Recruiting Phase 2 National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT04074135

• A database to understand von Hippel-Lindau Disease and related conditions

  This study is creating a database to see how lifestyle and other factors affect people with von Hippel-Lindau Disease and similar conditions, helping researchers find better treatments and understand the disease better.

  Recruiting VHL Alliance · Boston, Massachusetts · NCT03749980

• Investigating genetic factors in childhood cancer

  This study is trying to find out if certain genes passed down in families can increase the risk of childhood cancer by looking at samples from kids who have had cancer and their relatives.

  Recruiting St. Jude Children's Research Hospital · Memphis, Tennessee · NCT03050268

• Screening for tumors in patients with von Hippel-Lindau disease

  This study is testing the best ways to find small tumors in the ears of people with von Hippel-Lindau disease to help catch them early and prevent hearing loss.

  Recruiting University of Copenhagen · Copenhagen, Copenhagen N · NCT02420067

Related topics

Quick answers

How many Von Hippel-Lindau Disease clinical trials are recruiting right now?

12, as of November 12, 2026. We update this list each time we refresh our data from ClinicalTrials.gov.

Where are these trials running?

In 32 countries. The most sites are in United States (6 trials), Denmark (3 trials), Italy (2 trials), China (2 trials), Australia (2 trials). Each study page lists its sites and which ones are recruiting.

What phases are they in?

Phase 2: 3, Phase 3: 1. Trials with no phase listed are usually device, behavioural or observational studies.

How do I join one?

Open a study, check the "Is this trial a fit for you?" section, then contact the study team listed on the page. They will ask a few screening questions. Asking is free and does not commit you to anything. Talk it over with your doctor first.

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