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New UK registry aims to unlock secrets of polycystic liver disease

NCT ID NCT04645251

Knowledge-focused Sponsor: Portsmouth Hospitals NHS Trust Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This observational registry is recruiting 500 people with polycystic liver disease (PLD) across the UK. Researchers will collect data from medical records and questionnaires to map how the disease progresses, including symptoms, liver cyst changes, and quality of life. The goal is to better understand PLD and identify factors that lead to complications or the need for treatment.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry will provide a clearer picture of how polycystic liver disease progresses, which could guide future treatments and improve patient care.
What could go wrong
This is an observational study, not a treatment trial. It collects data only and will not directly improve participants' health. Results depend on accurate reporting and may take years to yield meaningful insights.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2021

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

A government agency

The lead sponsor is a government body.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Mixture of adult patients with PKD and PLD

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

autosomal dominant polycystic liver disease Polycystic liver disease

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Polycystic liver disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    2 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Portmouth Hospitals University NHS Trust

    RECRUITING

    Portsmouth, Hampshire, PO63LY, United Kingdom

  • Radboud University Medical Center

    RECRUITING

    Nijmegen, 6525, Netherlands

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