Quality of Life, Psychological Impact, and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome.
NCT ID: NCT07275099
Last Updated: 2026-01-28
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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NOT_YET_RECRUITING
200 participants
OBSERVATIONAL
2026-02-01
2035-12-01
Brief Summary
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Detailed Description
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The hypothesis underlying this study is that individuals affected by VHL experience a substantial psychological burden and face variable access to appropriate care pathways, which may differ based on demographic or clinical factors.
The study will involve a single group of participants (n ≈ 200). No control group or randomization is foreseen. The study duration is estimated at 10 years, including data collection and analysis.
Each participant will be involved once, with a single data collection session (approx. 25-30 minutes) through the study-specific questionnaire "VHL: Accesso alle cure e vita quotidiana". The questionnaire, administered in Italian via the Google Forms platform, is not part of routine clinical practice and is administered exclusively for research purposes.
Conditions
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Study Design
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CASE_ONLY
CROSS_SECTIONAL
Study Groups
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Single - centre, cross - sectional observational study with additional procedure.
Adult subjects (≥ 18 years) with confirmed diagnosis of von Hippel - Lindau syndrome
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* Genetically confirmed diagnosis of von Hippel- Lindau syndrome
Exclusion Criteria
18 Years
ALL
No
Sponsors
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IRCCS Ospedale San Raffaele
OTHER
Responsible Party
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Larcher Alessandro
Medical Doctor
Central Contacts
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Other Identifiers
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QoL- VHL
Identifier Type: -
Identifier Source: org_study_id
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