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hemangioblastoma - Clinical Profile, Genes & Research | Kisho | Kisho

Rare Disease

hemangioblastoma

MONDO:0016748

Also known as:angioblastomacapillary hemangioblastomaHMBL

Find Clinical TrialsTrials

Overview

Hemangioblastoma is a rare, benign, highly vascularized tumor of the central nervous system, most often located in the cerebellum or spinal cord, presenting in adulthood and manifesting with dizziness, nausea, malaise, headache, bladder or bowel dysfunction, numbness, weakness and pain in the upper or lower extremities, and often associated with von Hippel-Lindau disease (VHL). Exceptional cases of hemangioblastoma arising outside of the central nervous system have been reported.

Clinical Trials8 registered · 4 recruiting

Clinical Presentation

Built from Human Phenotype Ontology (HPO) phenotype annotations and GeneReviews clinical descriptions. Features represent findings documented across known cases — not an exhaustive list of possible symptoms.

Features include always present findings: Hemangioblastoma; and very common findings: Nausea and vomiting, Headache, Vertigo, and Cerebellar hemangioblastoma and others. 16 total HPO annotations.

Organ System	Phenotype Count	Example Features
Brain and nerves	3	Headache, Trigeminal neuralgia, Hydrocephalus

Diagnosis

Biomarker and diagnostic research for hemangioblastoma has been reported in the published literature.

Prognosis

Phenotype severity distribution: 1 always present feature, 7 very common features, 7 common features.

Research Landscape

Sourced from ClinicalTrials.gov and PubMed. Publication types are classified using NLM-curated article metadata; research type breakdowns reflect the nature of published work for this disease.

8 clinical trials registered, 4 recruiting. Interventions under study include other interventions and drug therapy. Pipeline includes 1 PHASE4, 2 PHASE2, 1 NA. Research is primarily sponsored by academic and government institutions.

NCT ID	Title	Phase	Sponsor	Status
[NCT06638931](https://clinicaltrials.gov/study/NCT06638931)

Data assembled from 5 of 12 sources · Last updated Sep 19, 2026, 6:44 AM UTC

MONDOHPOClinicalTrials.govFDAPubMedHGNCClinVarClinGenGeneReviewsOrphanetOMIMRUSP

Medical References

External Resources

Orphanet

European rare disease database

Orphanet:252054

GARD

Genetic and Rare Diseases Info Center

GARD:8232

Questions for Your Care Team

→Are any of the 8 active clinical trials a good fit for my situation?
→Are there specialists or centers of excellence for this condition in my area?
→Is there a patient registry I should consider joining?

← Back to All Diseases

Research Type	Count	% of Total
Research summaries	28	29%
Patient case studies	23	23%
Disease patterns and progression	13	13%
Clinical study results	12	12%
Testing and diagnosis research	9	9%
Laboratory research	6	6%
New treatment approaches	5	5%
Other research	2	2%

Kisho

hemangioblastoma

Overview

Clinical Presentation

Diagnosis

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Questions for Your Care Team

Questions for Your Care Team

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hemangioblastoma

Overview

Clinical Presentation

Diagnosis

Prognosis

Research Landscape

Medical References

External Resources

Orphanet

GARD

Related Diseases

Questions for Your Care Team

Questions for Your Care Team

Explore clinical features

Recent Publications