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Scientists track hidden brain tumors in children with rare genetic condition

NCT ID NCT07705529

Not yet recruiting Knowledge-focused Sponsor: Assistance Publique - Hôpitaux de Paris Source: ClinicalTrials.gov ↗

First seen Jul 15, 2026 · Last updated Jul 16, 2026 · Updated 1 time

Summary

This 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 medical records from multiple hospitals, the study aims to improve monitoring and treatment decisions for this young population.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to
If successful, this study could help doctors better predict when surgery is needed for children with VHL-related brain tumors, potentially improving long-term outcomes.
What could go wrong
This is a small, retrospective observational study, so it cannot prove cause and effect. Results may not apply to all children with VHL disease.

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Conditions

The condition(s) this trial relates to.

hemangioblastoma von Hippel-Lindau disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

CENTRAL NERVOUS SYSTEM HEMANGIOBLASTOMA VON HIPPEL LINDAU DISEASE

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Hôpital Femme Mère Enfant, HCL

    Lyon, France

    Contact Email: •••••@•••••

    Contact

  • Hôpital Necker

    Paris, France

    Contact Email: •••••@•••••

  • Hôpital Roger Salengro, CHU Lille

    Lille, France

    Contact Email: •••••@•••••

    Contact

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