19 completed, 17 recruiting, 7 terminated, 5 unknown. 18 Phase 2, 9 Phase 1, 4 Not applicable, 2 Early Phase 1, 1 Phase 3.
Follow von Hippel-Lindau Disease: new trials by email Literature Review of von Hippel-Lindau Disease trials Research Report on von Hippel-Lindau Disease
Tick up to 5 trials to compare them side by side (eligibility, arms, endpoints, adverse events) in a Literature Matrix.
| Trial | Phase | Status | Sponsor | Enrollment | Start | Updated |
|---|---|---|---|---|---|---|
| Pediatric Von Hippel-Lindau Disease: Natural History, Predictive Factors, and Long-Term Functional Outcomes of Central Nervous System Hemangioblastomas Von Hippel-Lindau Disease, Central Nervous System Hemangioblastoma | Not yet recruiting | Assistance Publique - Hôpitaux de Paris | 25 | 2026-07-15 | 2026-07-15 | |
| Quality of Life, Psychological Impact, and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome. VHL - Von Hippel-Lindau Syndrome | Active not recruiting | IRCCS Ospedale San Raffaele | 200 | 2026-05-01 | 2026-05-11 | |
| 18F-T2 PET/CT Imaging for CAIX Positive Solid Tumors 18F-T2 PET/CT - Clear Cell Renal Cell Cancer (ccRCC), Urothelial Carcinoma (UC) | Not applicable | Recruiting | Peking University First Hospital | 200 | 2026-04-27 | 2026-05-14 |
| Extension Study for Participants in Studies That Include Belzutifan (MK-6482-043/LITESPARK-043) Belzutifan, Nivolumab, Lenvatinib - Von Hippel-Lindau Disease, Malignant Neoplasms | Phase 3 | Recruiting | Merck Sharp & Dohme LLC | 450 | 2026-03-23 | 2026-10-21 |
| CAT-VHL Exploring the Role of Carbonic Anhydrase IX as Diagnostic and Theranostic Target in Von-Hippel Lindau Disease investigating the role of CAIX as target in VHL disease and in VHL-/- tumors. - VHL - Von Hippel-Lindau Syndrome | Phase 2 | Recruiting | IRCCS Ospedale San Raffaele | 38 | 2026-02-25 | 2026-03-09 |
| Belzutifan VHL RCC HK Prospective Registry VHL - Von Hippel-Lindau Syndrome | Recruiting | Chinese University of Hong Kong | 100 | 2025-12-22 | 2026-10-22 | |
| Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease 3RP-VHL - Von Hippel-Lindau Disease, Genetic Disorder | Not applicable | Active not recruiting | Massachusetts General Hospital | 40 | 2024-07-30 | 2026-06-12 |
| A Study of HS-10516 in Patients With VHL Syndrome Associated Tumors Oral HS-10516 - Von Hippel Lindau-Deficient Clear Cell Renal Cell Carcinoma | Phase 1 | Recruiting | Jiangsu Hansoh Pharmaceutical Co., Ltd. | 60 | 2024-07-19 | 2024-08-14 |
| Institutional Registry of Rare Diseases Rare Diseases, Amyloidosis | Recruiting | Hospital Italiano de Buenos Aires | 380 | 2024-07-01 | 2026-01-14 | |
| MSD Belzutifan PAS Belzutifan - Von Hippel Lindau Disease | Withdrawn | Merck Sharp & Dohme LLC | 2024-06-30 | 2024-11-29 | ||
| Real-World Effectiveness and Pharmacogenetics of Belzutifan in VHL Syndrome: The BELIEVE-VHL Trial Belzutifan - Von Hippel Lindau, Von Hippel Lindau Disease | Phase 2 | Recruiting | José Claudio Casali da Rocha | 100 | 2024-01-01 | 2025-09-11 |
| Overtaking Intra and Inter Tumoral Heterogeneity In Von Hippel-Lindau Related Renal Cancer Blood collection - Clear Cell Renal Cell Carcinoma, VHL Syndrome | Completed | IRCCS San Raffaele | 3 | 2023-11-08 | 2026-10-16 | |
| Establishment of a Multidimensional Prediction Model for the Natural Course of VHL Disease-related Renal Cell Carcinoma Single cell sequencing, whole genome and metabolomic sequencing - VHL Syndrome, Renal Cell Carcinoma | Unknown | Peking University First Hospital | 300 | 2023-09-08 | 2024-04-30 | |
| Data Collection Protocol for Patients With Von Hippel Lindau Disease Von Hippel Lindau Disease | Recruiting | M.D. Anderson Cancer Center | 125 | 2023-08-24 | 2026-06-26 | |
| Mechanisms of Somatic Mutation and Tumor Initiation in Pre-malignant Kidney Tubule Cells Blood and urine sample collection - Carcinoma, Renal Cell, Von Hippel-Lindau Disease | Recruiting | IRCCS San Raffaele | 50 | 2023-06-30 | 2024-01-10 | |
| 68Ga-NY104 PET/CT in Von Hippel-Lindau Disease 68Ga-NY104 PET/CT Contrast-enhanced MRI of the brain and contrast-enhanced CT of abdomen and pelvis) 68Ga-NODAGA-LM3 PET/CT (exploratory) - Von Hippel-Lindau Disease | Phase 2 | Unknown | Peking Union Medical College Hospital | 19 | 2023-05-01 | 2023-05-11 |
| A Study of BPI-452080 in Subjects With Solid Tumors BPI-452080 - Solid Tumor, Renal Cell Carcinoma | Phase 1 | Unknown | Betta Pharmaceuticals Co., Ltd. | 87 | 2023-04-28 | 2023-05-06 |
| Propranolol and Von Hippel-Lindau Disease Propranolol, follow-up - Hemangioblastoma of CNS, Von Hippel-Lindau Disease | Not applicable | Recruiting | Assistance Publique - Hôpitaux de Paris | 85 | 2023-01-16 | 2023-12-13 |
| Frequency, Clinical Phenotype and Genetic Analysis of Heritable Kidney Cancer Syndromes Gene test - Renal Tumor Histology, Kidney Cancer | Unknown | RenJi Hospital | 500 | 2022-10-01 | 2023-08-31 | |
| Genetic Bases of Neuroendocrine Neoplasms in Mexican Patients Neuroendocrine Neoplasm, Neuroendocrine Neoplasm of Gastrointestinal Tract | Recruiting | Universidad Nacional Autonoma de Mexico | 750 | 2022-08-03 | 2024-07-26 |
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Carcinoma, Renal Cell (14) · Hemangioblastoma (10) · Pheochromocytoma (7) · Paraganglioma (6) · Kidney Neoplasms (5) · Multiple Endocrine Neoplasia Type 1 (4) · Neoplasms (4) · Neuroendocrine Tumors (4) · Adenoma, Islet Cell (3) · Hereditary leiomyomatosis and renal cell cancer (3) · Neuroectodermal Tumors, Primitive (3) · Neurofibromatosis 1 (3) · Pancreatic Neoplasms (3) · Tuberous Sclerosis (3)
Abnormalities, Multiple (55) · Angiomatosis (55) · Cardiovascular Diseases (55) · Ciliopathies (55) · Congenital Abnormalities (55) · Congenital, Hereditary, and Neonatal Diseases and Abnormalities (55) · Nervous System Diseases (55) · Vascular Diseases (55) · Genetic Diseases, Inborn (54) · Neurocutaneous Syndromes (53) · Neoplasms (32) · Neoplasms by Histologic Type (30) · Neoplasms by Site (25) · Neoplasms, Glandular and Epithelial (20) · Female Urogenital Diseases (18)
belzutifan (5) · Ranibizumab (3) · Sunitinib (3) · gallium Ga 68 dotatate (3) · Blood Specimen Collection (2) · 4-amino-5-fluoro-3-(5-(4-methylpiperazin-1-yl)-1H-benzimidazol-2-yl)quinolin-2(1H)-one (1) · Bevacizumab (1) · E10030 aptamer (1) · Everolimus (1) · Exome Sequencing (1) · Fluorodeoxyglucose F18 (1) · Magnetic Resonance Spectroscopy (1) · Nivolumab (1) · Oxygen-15 (1) · PT2385 (1)
National Eye Institute (NEI) (7) · M.D. Anderson Cancer Center (5) · National Cancer Institute (NCI) (5) · Merck Sharp & Dohme LLC (3) · National Institute of Neurological Disorders and Stroke (NINDS) (3) · Assistance Publique - Hôpitaux de Paris (2) · IRCCS Ospedale San Raffaele (2) · IRCCS San Raffaele (2) · National Institutes of Health Clinical Center (CC) (2) · Novartis Pharmaceuticals (2) · Peking University First Hospital (2) · Peloton Therapeutics, Inc., a subsidiary of Merck & Co., Inc. (Rahway, New Jersey USA) (2) · Association Pour La Recherche des Thérapeutiques Innovantes en Cancérologie (1) · Betta Pharmaceuticals Co., Ltd. (1) · Chinese University of Hong Kong (1)
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Eric Jonasch, MD (3) · Naris Nilubol, M.D. (3) · Prashant Chittiboina, M.D. (2) · Adrian Gadano, MD (1) · Alessandro Larcher, MD (1) · Andrea Salonia, MD (1) · Catherine Meyerle, MD (1) · Dingwei Ye, Ph.D (1) · Eduardo Jorge Premoli, MD (1) · Emily Y Chew, M.D. (1) · Eric Jonasch (1) · Giselle Perez, PhD (1) · Henry E Wiley, M.D. (1) · Hernan Garcia Rivello, MD (1)
PMID 34783716, PMID 17804777, PMID 21354816, PMID 22105611, PMID 23787357, PMID 24579662, PMID 25626035, PMID 30236511, PMID 32130814, PMID 33846112, PMID 34549489, PMID 34818478, PMID 37018064, PMID 39284337, PMID 39657598, PMID 39951686, PMID 40228516, PMID 41124218
2023 (2), 2018 (1), 2025 (1)