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Medical management of CNS hemangioblastoma in pediatric patients with von Hippel-Lindau (VHL) disease

Medical management of CNS hemangioblastoma in pediatric patients with von Hippel-Lindau (VHL) disease

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00029553
Enrollment
130
Registered
2022-08-16
Start date
2022-08-15
Completion date
Unknown
Last updated
2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

D48.1 Q85.8

Interventions

Group 1: Pediatric patients diagnosed with VHL disease and available MRI examinations of the CNS during the period 01/2000 - 07/2022

Sponsors

Universitätsklinikum Freiburg
Lead Sponsor

Eligibility

Sex/Gender
All
Age
1 Years to 18 Years

Inclusion criteria

Inclusion criteria: Pediatric patients diagnosed with VHL disease and available MRI examinations of the CNS during the period 01/2000 - 07/2022

Exclusion criteria

Exclusion criteria: Presence of sporadic CNS hemangioblastoma (thus excluding VHL disease). Presence of MRI examinations exclusively in adulthood.

Design outcomes

Primary

MeasureTime frame
Clinical neurological status (modified Rankin Scale and modified McCormick Scale) of VHL patients at entry into adulthood in terms of the number of a) detected CNS hemangioblastomas as well as b) microsurgical removals of CNS hemangioblastomas in childhood/adolescence.

Secondary

MeasureTime frame
- Comparison of clinical neurological status (mRS and modified McCormick Scale) postoperatively to preoperatively - Survey of complications and reasons of possible worsening of clinical outcome due to microsurgical therapy of CNS hemangioblastomas - To evaluate the indication for microsurgical removal of CNS hemangioblastomas in children/adolescents (asymptomatic/symptomatic) - Survey of clinical neurological symptoms that led to MRI examination of the CNS outside the screening intervals (unscheduled) - Survey of the number of tumor recurrences in childhood/adolescence - Age distribution of performed surgeries on CNS hemangioblastomas in VHL patients in childhood/adolescence - Survey of the number and distribution of CNS hemangioblastomas at the time of first MRI examination of the CNS - To survey the age in childhood/adolescence with first detection of CNS hemangioblastoma

Countries

Germany

Contacts

Public ContactJan-Helge Klingler

Universitätsklinikum Freiburg, Klinik für Neurochirurgie

jan-helge.klingler@uniklinik-freiburg.de+49 761 270 50010

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 8, 2026