New UK registry aims to unlock secrets of polycystic liver disease

NCT ID NCT04645251

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.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Portmouth Hospitals University NHS Trust

    RECRUITING

    Portsmouth, Hampshire, PO63LY, United Kingdom

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••

  • Radboud University Medical Center

    RECRUITING

    Nijmegen, 6525, Netherlands

    Contact Email: •••••@•••••

    Contact Email: •••••@•••••