NCT07275099

Brief Summary

This is a single-centre, cross-sectional observational study aiming to assess the psychological burden, quality of life, and perceived barriers to care in patients with von Hippel-Lindau syndrome (VHL). Data will be collected through an anonymous online questionnaire, specifically designed for the study and administered via Google Forms.

Trial Health

65
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
200

participants targeted

Target at P75+ for all trials

Timeline
117mo left

Started Feb 2026

Longer than P75 for all trials

Status
not yet recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress3%
Feb 2026Dec 2035

First Submitted

Initial submission to the registry

November 28, 2025

Completed
12 days until next milestone

First Posted

Study publicly available on registry

December 10, 2025

Completed
2 months until next milestone

Study Start

First participant enrolled

February 1, 2026

Completed
9.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2035

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 1, 2035

Last Updated

January 28, 2026

Status Verified

October 1, 2025

Enrollment Period

9.8 years

First QC Date

November 28, 2025

Last Update Submit

January 27, 2026

Conditions

VHL - Von Hippel-Lindau Syndrome

Outcome Measures

Primary Outcomes (1)

  • Completion of a self- administered questionnaire

    The research activity consists in the anonymous collection of patient- reported data through an online questionnaire. No diagnostic, therapeutic, or experimental interventions are foreseen. The study fully complies with the definition of non-interventional observational research.

    Single time point (approximately 25-30minutes).

Study Arms (1)

Single - centre, cross - sectional observational study with additional procedure.

Adult subjects (≥ 18 years) with confirmed diagnosis of von Hippel - Lindau syndrome

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Adult subjects (≥18 years) with confirmed diagnosis of von Hippel - Lindau syndrome

You may qualify if:

  • Age ≥18 years
  • Genetically confirmed diagnosis of von Hippel- Lindau syndrome

You may not qualify if:

  • Inability to understand or complete the questionnaire, either independently or with assistance

Contact the study team to confirm eligibility.

Sponsors & Collaborators

MeSH Terms

Conditions

von Hippel-Lindau Disease

Condition Hierarchy (Ancestors)

Neurocutaneous SyndromesNervous System DiseasesAngiomatosisVascular DiseasesCardiovascular DiseasesCiliopathiesAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesGenetic Diseases, Inborn

Central Study Contacts

Alessandro Larcher

CONTACT

+39 02.2643.4121larcher.alessandro@hsr.it

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
CROSS SECTIONAL
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Medical Doctor

Study Record Dates

First Submitted

November 28, 2025

First Posted

December 10, 2025

Study Start

February 1, 2026

Primary Completion (Estimated)

December 1, 2035

Study Completion (Estimated)

December 1, 2035

Last Updated

January 28, 2026

Record last verified: 2025-10