Polycystic Liver Disease Registry

• Research type

  Research Study

• Full title

  Polycystic Liver Disease Registry - a cohort study of the natural history of polycystic liver disease

• IRAS ID

  228220

• Contact name

  Richard Aspinall

• Contact email

  richard.aspinall@porthosp.nhs.uk

• Sponsor organisation

  Portsmouth Hospitals NHS Trust

• Duration of Study in the UK

  10 years, 0 months, 0 days

• Research summary

  The Polycystic Liver Disease (PLD) registry will be part of an international, multicentre, observational registry. All patients with Polycystic Kidney Disease (PKD) with PLD or patients with Isolated (without PKD) Polycystic Liver Disease are eligible for inclusion (for both >10 liver cysts).
  Data will be collected prospectively and retrospectively including a specific PLD questionnaire.
  This registry provides us insight in patient characteristics, risk factors, symptoms, quality of life and treatment strategies in the biggest international PLD cohort so far. Results of this registry will be published and shared at national and international congresses.

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  20/NW/0405

• Date of REC Opinion

  8 Oct 2020

• REC opinion

  Favourable Opinion