Polycystic Liver Disease Registry (UK)

Last updated: November 12, 2024
Sponsor: Portsmouth Hospitals NHS Trust
Overall Status: Active - Recruiting

Phase

N/A

Condition

Primary Biliary Cholangitis

Treatment

N/A

Clinical Study ID

NCT04645251
228220
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study Summary

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

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Patients with PLD with more than 10 liver cysts

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

Exclusion

Exclusion Criteria:

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

Study Design

Total Participants: 500
Study Start date:
January 21, 2021
Estimated Completion Date:
December 01, 2030

Study 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.

Connect with a study center

  • Radboud University Medical Center

    Nijmegen, 6525
    Netherlands

    Active - Recruiting

  • Portmouth Hospitals University NHS Trust

    Portsmouth, Hampshire PO63LY
    United Kingdom

    Active - Recruiting

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