Clinical Trial

Pediatric Von Hippel-Lindau Disease: Natural History, Predictive Factors, and Long-Term Functional Outcomes of Central Nervous System Hemangioblastomas

Study acronym: VHL-PED-CHB
Not Yet Recruiting
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Summary
Von Hippel-Lindau (VHL) disease is a rare hereditary cancer predisposition syndrome associated with the development of central nervous system hemangioblastomas from childhood. The natural history of these lesions in pediatric patients remains poorly characterized, particularly regarding the factors that predict progression from radiological surveillance to neurosurgical intervention. This multicenter retrospective observational study aims to identify clinical, radiological, and genetic predictors of surgical indication in children with VHL-associated CNS hemangioblastomas and to evaluate their long-term neurological and functional outcomes. The findings may contribute to optimizing surveillance strategies and improving clinical decision-making in this rare population.
Trial Details
NCT Number NCT07705529
Lead Sponsor Assistance Publique - Hôpitaux de Paris
Conditions Von Hippel-Lindau Disease, Central Nervous System Hemangioblastoma
Enrollment 25 participants
Start Date 2026-07-15
Primary Completion 2027-07-15 (estimated)
Study Completion 2027-07-15 (estimated)
Updated on ClinicalTrials.gov 2026-07-15