RareWays is a research directory. It helps you understand the science. It is not medical advice. Always discuss your care options with your healthcare team.
Coverage: 2020-01-01 onwards, with up to 300 results per query from PubMed and Europe PMC and separate limits on other sources. This is a selected index, not a complete literature search.
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Von Hippel-Lindau Disease: Research Summary
Printed from RareWays (rareways.org)
For general awareness only. Not medical advice. Discuss all care options with your healthcare team.
5 Most Recent Research Articles
- 1.
CD70-Targeted PET/CT in a Patient with von Hippel-Lindau Syndrome and Clear Cell Renal Cell Carcinoma.
Deng Ailin et al., Journal of nuclear medicine : official publication, Society of Nuclear Medicine (15 October 2026)
https://pubmed.ncbi.nlm.nih.gov/42880966/
- 2.
Detection of far peripheral retinal vascular changes in von Hippel-Lindau syndrome using widefield fluorescein angiography: The Beijing Rare Eye Disease Study (BREDS)
Ruilin Zhu et al., International Journal of Retina and Vitreous (12 October 2026)
https://doi.org/10.1186/s40942-026-00951-x
- 3.
Análisis de la supervivencia en pacientes con hemangioblastoma esporádico frente al vinculado a Von Hippel-Lindau. Experiencia de dos centros de referencia
Alicia Sanz-Zorrilla et al., Cirugía y Cirujanos (7 October 2026)
https://doi.org/10.24875/ciru.23000614
- 4.
Feasibility and Risks of Preoperative Embolization for CNS Hemangioblastoma Surgery at a National VHL Referral Center
Roberto Doria-Medina et al., Brain and Spine (1 October 2026)
https://doi.org/10.1016/j.bas.2026.107475
- 5.
Retinal capillary haemangioblastoma with localised serous retinal detachment.
Hallak Mustafa Kamal et al., Eye (London, England) (1 October 2026)
https://pubmed.ncbi.nlm.nih.gov/42823520/
Clinical Trials : Currently Recruiting (Australia)
Ask your doctor whether you or your child may be eligible for any of these trials. Each has its ID and full eligibility criteria at the link shown.
- 1.
Extension Study for Participants in Studies That Include Belzutifan (MK-6482-043/LITESPARK-043)
NCT07405164 · Recruiting · Phase 3 · Merck Sharp & Dohme LLC
Ages 18 and over
https://clinicaltrials.gov/study/NCT07405164
- 2.
Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015)
NCT04924075 · Recruiting · Phase 2 · Merck Sharp & Dohme LLC
Ages 12 and over
https://clinicaltrials.gov/study/NCT04924075
Source: RareWays research directory. Data from PubMed, Europe PMC, OpenAlex, ClinicalTrials.gov.
Always verify information with your healthcare team before making any decisions about your care.
Von Hippel-Lindau Disease
Von Hippel-Lindau Disease is a rare hereditary condition caused by mutations in the VHL tumour suppressor gene, predisposing individuals to multiple tumours including haemangioblastomas of the brain and retina, clear cell renal cell carcinoma, and phaeochromocytoma. It affects approximately 1 in 36,000 people. Regular surveillance and targeted therapy with belzutifan are the current management approach.
This overview is general information, not an individual medical assessment. Research is selected automatically and may include mismatches. How we select and explain research.
Most Recent Research
Common Questions
What is Von Hippel-Lindau Disease?
Von Hippel-Lindau Disease is a rare hereditary condition caused by mutations in the VHL tumour suppressor gene, predisposing individuals to multiple tumours including haemangioblastomas of the brain and retina, clear cell renal cell carcinoma, and phaeochromocytoma. It affects approximately 1 in 36,000 people. Regular surveillance and targeted therapy with belzutifan are the current management approach.
How many clinical trials are available for Von Hippel-Lindau Disease?
RareWays currently indexes 25 clinical trials for Von Hippel-Lindau Disease, of which 7 are actively recruiting. These counts cover indexed trials across countries, not just your country. An Australian site does not necessarily mean that site is recruiting. Check locations, eligibility and current availability with the study team.
Where does the research data for Von Hippel-Lindau Disease come from?
RareWays aggregates research from PubMed, Europe PMC, OpenAlex, and ClinicalTrials.gov. Data is refreshed automatically every day. All articles and trials link directly to their original sources.
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