Quality of Life, Psychological Impact, and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome.

Quality of Life, Psychological Impact and Care-related Challenges in Patients Affected by Von Hippel-Lindau Syndrome: a Single-centre Observational, Transversal, Study.

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT07275099

Acronym

QoL- VHL

Enrollment

200

Registered

2025-12-10

Start date

2026-05-01

Completion date

2035-12-01

Last updated

2026-05-11

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

Conditions

VHL - Von Hippel-Lindau Syndrome

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.

Detailed description

This is a single-centre, cross-sectional observational study designed to assess the psychological burden and health-related quality of life in individuals with von Hippel-Lindau (VHL) syndrome, and to explore perceived barriers to healthcare access and the perceived adequacy of multidisciplinary care. 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.

Interventions

None listed

Study design

Observational model

CASE_ONLY

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

Inclusion criteria

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

Exclusion criteria

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

Design outcomes

Primary

Measure	Time frame	Description
Completion of a self- administered questionnaire	Single time point (approximately 25-30minutes).	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.

Countries

Italy

Outcome results