Von Hippel-Lindau disease
MONDO:0008667An autosomal dominant disorder caused by pathogenic variants in the VHL gene, leading to an increased risk of various benign and malignant tumors, including hemangioblastomas, retinal hemangiomas, endolymphatic sac tumors, renal cell carcinoma, and pheochromocytomas.
Also known as: Lindau disease, VHL, VHL-related von Hippel-Lindau disease, Von Hippel-Lindau syndrome, Von Hippel-Lindau syndrome (VHL), cerebroretinal angiomatosis, familial cerebelloretinal angiomatosis, von Hippel-Lindau disease
27 clinical trials for this condition and its sub-types.
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Could a daily pill tame rare cancers in teens? new trial investigates
Disease control Not yet recruitingThis phase 2 trial tests the safety of belzutifan, a daily oral tablet, in adolescents with rare solid tumors that cannot be surgically removed or have spread. The study includes three tumor types: pheochromocytoma/paraganglioma (PPGL), wild-type gastrointestinal stromal tumors (…
Phase: PHASE2 • Sponsor: Merck Sharp & Dohme LLC • Aim: Disease control
Last updated Aug 15, 2026 00:00 UTC
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New registry to monitor Belzutifan's Real-World impact on rare VHL tumors
Disease control Not yet recruitingThis study will follow 100 adults with von Hippel-Lindau (VHL) disease who choose to take belzutifan. Researchers will track how well the drug shrinks tumors, its side effects, and its impact on quality of life and healthcare costs. The goal is to better understand the drug's rea…
Sponsor: Chinese University of Hong Kong • Aim: Disease control
Last updated Jun 27, 2026 12:29 UTC
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Scientists track hidden brain tumors in children with rare genetic condition
Knowledge-focused Not yet recruitingThis study looks at children with Von Hippel-Lindau (VHL) disease, a rare genetic condition that causes tumors in the brain and spinal cord. Researchers want to understand how these tumors grow over time and what factors predict when a child will need surgery. By reviewing medica…
Sponsor: Assistance Publique - Hôpitaux de Paris • Aim: Knowledge-focused
Last updated Jul 17, 2026 00:00 UTC