Registry for Polycystic Liver Disease in the UK
Polycystic Liver Disease Registry (UK)
This study is collecting information from people with polycystic liver disease in the UK to better understand how the condition affects them and what treatments might work best.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Portsmouth Hospitals NHS Trust Government |
| Locations | 2 sites (Nijmegen and 1 other locations) |
| Trial ID | NCT04645251 on ClinicalTrials.gov |
What this trial studies
The Polycystic Liver Disease (PLD) registry in the UK is an observational study that aims to understand the natural progression of polycystic liver disease. It is part of a larger international registry led by Radboud University Medical Center in the Netherlands. The study collects both prospective and retrospective data, including responses from a validated questionnaire specific to PLD. This registry will help gather insights on patient characteristics, risk factors, symptoms, quality of life, and treatment strategies within the largest cohort of PLD patients to date.
Who should consider this trial
Good fit: Ideal candidates for this registry are patients with polycystic liver disease who have more than 10 liver cysts, including those with polycystic kidney disease.
Not a fit: Patients with fewer than 10 liver cysts will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of polycystic liver disease and improve patient management strategies.
How similar studies have performed: Other international registries have shown success in gathering valuable data on similar conditions, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Nijmegen and 1 other locations
- Radboud University Medical Center — Nijmegen, Netherlands (Recruiting)
- Portmouth Hospitals University NHS Trust — Portsmouth, Hampshire, United Kingdom (Recruiting)
Study contacts
- Study coordinator: Richard Aspinall, BSc, MBChB, PhD
- Email: richard.aspinall@porthosp.nhs.uk
- Phone: 02392286255
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.