Polycystic Liver Disease Registry (UK) (PLD)

Portsmouth Hospitals NHS Trust

Status: Enrolling

Conditions: Polycystic Liver Disease

Study type: Observational

Funder types: Other

Identifiers

NCT04645251

228220

Details and patient eligibility

About

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

Full 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.

Enrollment: 500 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Patients with PLD with more than 10 liver cysts
• Patients with PKD and PLD with more than 10 liver cysts

Exclusion criteria

• Patients with PKD or PLD with less than 10 liver cysts