RecruitingOBSERVATIONAL

Polycystic Liver Disease Registry (UK)

This study, called the Polycystic Liver Disease Registry (UK), is collecting important information about Polycystic Liver Disease (PLD). This is a condition where fluid-filled sacs, called cysts, grow in the liver. It's also looking at people who have PLD alongside Polycystic Kidney Disease (PKD). By gathering details from many patients across the UK and other countries, researchers hope to better understand how these conditions develop, what causes symptoms, how they affect quality of life, and which treatments work best. This is an 'observational' study, meaning you won't be given any new treatments; instead, doctors will simply record information about your usual care through questionnaires and medical records. This will help improve care for people with PLD in the future.

At a glance

Status

Recruiting

Sponsor

Portsmouth Hospitals NHS Trust

Enrolment target

500

Start

21 Jan 2021

Estimated completion

01 Dec 2030

Polycystic Liver Disease

What is this study about?

Imagine a big database or an online register where doctors can collect information about people who have Polycystic Liver Disease (PLD). That's exactly what the Polycystic Liver Disease Registry (UK) is. PLD is a condition where lots of small, fluid-filled sacs, called cysts, grow in the liver. Sometimes, people have PLD by itself, and sometimes they have it along with Polycystic Kidney Disease (PKD), which causes cysts to grow in the kidneys too.

This study is part of a larger international effort, guided by a team in the Netherlands, to build the biggest collection of information about PLD patients yet. By bringing all this information together, doctors and researchers can look for patterns. They want to understand things like: what are the common symptoms? How does PLD affect a person's daily life? Are certain treatments more effective than others? And what are the risk factors that might make the condition worse or better?

This is an 'observational' study. This means that if you take part, you won't be given any new medicines or treatments as part of the study itself. Instead, the researchers will simply record details about your health, your symptoms, and any treatments you're already receiving as part of your normal medical care. They will also ask you to fill out a special questionnaire about your experience with PLD. The goal is to learn from real-life experiences to help improve care and develop better treatments for everyone with PLD in the future.

Key takeaways

This study collects information about Polycystic Liver Disease (PLD) and Polycystic Kidney Disease (PKD).
It's open to adults (18+) with more than 10 cysts in their liver.
It's an 'observational' study, meaning no new treatments are given.
Participation involves sharing existing medical records and completing a questionnaire.
Your data will help improve future care and understanding of PLD.
You can withdraw at any time without affecting your medical treatment.

Who may be eligible?

To be able to join this study, you generally need to be an adult, aged 18 or older. You must have Polycystic Liver Disease (PLD), and scans should show that you have more than 10 cysts in your liver. This applies whether you have PLD on its own or if you also have Polycystic Kidney Disease (PKD).

If you have Polycystic Kidney Disease (PKD) but do not have cysts in your liver, or if you have PLD but have fewer than 10 cysts in your liver, then this particular study would not be suitable for you. The study is specifically focused on understanding people with a more significant number of cysts in their liver.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have Polycystic Liver Disease (PLD)?
Have scans shown you have more than 10 cysts in your liver?
Do you (or your doctor) know if you also have Polycystic Kidney Disease (PKD) with liver cysts?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, it mainly involves sharing information about your health. You won't be asked to visit the hospital extra times just for the study. Instead, researchers will collect details from your existing medical records, like your scan results and doctor's notes. You will also be asked to fill in a special questionnaire about your experience with Polycystic Liver Disease (PLD). This questionnaire helps the researchers understand your symptoms, how the condition affects your daily life, and your quality of life. There are no medications involved in this study and no specific follow-up appointments connected only to the study itself. The information will be collected over time, as long as you remain part of the registry.

Potential risks and benefits

Taking part in this study involves very few direct risks, as it's observational – meaning no new treatments or procedures are being tested on you. The main benefit is that your information will contribute to a much better understanding of Polycystic Liver Disease, potentially leading to improved care and treatments for others in the future. You always have the right to change your mind and withdraw from the study at any time, without giving a reason, and this will not affect your medical care.

Locations (2)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Radboud University Medical Center
Verified postcode
Nijmegen, Netherlands· Recruiting
Portmouth Hospitals University NHS Trust
Verified postcode
Portsmouth, United Kingdom· Recruiting

Common questions

What is Polycystic Liver Disease (PLD)?

It's a condition where many fluid-filled sacs, called cysts, grow in your liver.

Will I get new treatment in this study?

No, this is an 'observational' study, so you won't receive any new treatments; your usual care will continue.

What information will the study collect about me?

They will collect details from your medical records and ask you to complete a questionnaire about your symptoms and how PLD affects your life.

How long will I be in the study?

The information will be collected over time as long as you remain part of the registry; there isn't a fixed end date for your participation.

Will my information be kept private?

Yes, all your personal information will be kept confidential and handled securely.

How to find out more

Richard Aspinall, BSc, MBChB, PhD

richard.aspinall@porthosp.nhs.uk 02392286255 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.