NCT04645251

Polycystic Liver Disease Registry (UK)

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 500 (estimated)
• Sponsor: Portsmouth Hospitals NHS Trust · Other Government
• Sex: All
• Age: 18 Years
• Healthy volunteers: Accepted

Summary

Multicentre, observational registry studying the natural course of polycystic liver disease.

Detailed description

The Polycystic Liver Disease (PLD) registry (UK) is the UK specific part of an international, multicentre, observational registry. The overall international PLD registry is led by Radboud University Medical Center, Nijmegan, Netherlands. Note- please direct any queries about the international registry to the team at Radboud University Medical Center. All patients with Polycystic Kidney Disease (PKD) with PLD or patients with Isolated (without PKD) Polycystic Liver Disease are eligible for inclusion (\>10 liver cysts). Data will be collected prospectively and retrospectively including a specific validated PLD questionnaire (PLD-Q). This registry provides us insight in patient characteristics, risk factors, symptoms, quality of life and treatment strategies in the biggest international PLD cohort so far. Results of this registry will be published and shared at national and international congresses.

Conditions

• Polycystic Liver Disease

Timeline

• Start date: 2021-01-21
• Primary completion: 2030-12-01
• Completion: 2030-12-01
• First posted: 2020-11-27
• Last updated: 2025-12-23

Locations

2 sites across 2 countries: Netherlands, United Kingdom