Development and Validation of a Disease-Specific Questionnaire to Assess Patient-Reported Symptoms in Polycystic Liver Disease.
Myrte K Neijenhuis, Tom J G Gevers, Marie C Hogan...
https://pubmed.ncbi.nlm.nih.gov/26970415Actively Recruiting
Age: 18Years +
All Genders
Healthy Volunteers
ID04645251
Polycystic Liver Disease Registry (UK)
Led by Portsmouth Hospitals NHS Trust · Updated on 2025-12-23
500
Participants Needed
2
Research Sites
N/A
Total Duration
On this page
Sponsors
P
Portsmouth Hospitals NHS Trust
Lead Sponsor
R
Radboud University Medical Center
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are observing the natural course of polycystic liver disease (PLD) through a multicenter registry in the UK, which is part of a larger international study led by Radboud University Medical Center in the Netherlands. This registry aims to collect data on patient characteristics, risk factors, symptoms, quality of life, and treatment strategies for PLD. It includes patients with PLD, either isolated or associated with polycystic kidney disease (PKD), characterized by having more than 10 liver cysts. This study does not involve experimental treatments but collects data prospectively and retrospectively from participants. A validated questionnaire specific to PLD (PLD-Q) is used to assess quality of life. The registry will follow participants for up to 10 years to monitor disease progression, risk factors, and the effectiveness of different therapies. Participants will provide data over the course of the study including completion of the PLD-Q questionnaire. Researchers will track outcomes such as the natural progression of PLD, quality of life changes, liver growth rate, and complications. The long-term follow-up of 10 years allows detailed understanding of the disease and its management. Results will be shared at national and international scientific meetings.
CONDITIONS
Brief Title
Polycystic Liver Disease Registry (UK)
Who Can Participate
Age: 18Years +
All Genders
Healthy Volunteers
Eligibility Criteria
You may qualify if you...
- Patients with polycystic liver disease with more than 10 liver cysts
- Patients with polycystic kidney disease and polycystic liver disease with more than 10 liver cysts
- Aged 18 years or older
You will not qualify if you...
- Patients with polycystic kidney disease or polycystic liver disease with less than 10 liver cysts
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Long-term Monitoring
Duration - Up to 10 years
Participants are observed over time to collect data on the natural course of polycystic liver disease, including quality of life, risk factors, disease progression, and treatment outcomes.
Periodic visits as scheduled by the registry
Trial Site Locations
Total: 2 locations
1
Radboud University Medical Center
Nijmegen, Netherlands, 6525
Actively Recruiting
2
Portmouth Hospitals University NHS Trust
Portsmouth, Hampshire, United Kingdom, PO63LY
Actively Recruiting
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Research Team
R
Richard Aspinall, BSc, MBChB, PhD
B
Benjamin Giles, BSc, MBBS
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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Published Research Related To This Trial
Clinical management of polycystic liver disease.
René M M van Aerts, Liyanne F M van de Laarschot, Jesus M Banales...
https://pubmed.ncbi.nlm.nih.gov/29175241Clinical profile of autosomal dominant polycystic liver disease.
Qi Qian, Airong Li, Bernard F King...
https://pubmed.ncbi.nlm.nih.gov/12500201