Patient and Public Involvement in Research

Join our CLDF Research Hub Network to support and shape research for all those living with childhood liver disease today and in the future. The network is for anyone personally affected by childhood liver disease including:

  • Young People (16 and over) with a liver condition
  • Parents, siblings (16 and over)
  • Grandparents
  • Carers

No scientific knowledge or research experience is required

How you can get involved

Interested in becoming a CLDF Research Hub Network Member?

Step 1: Read the Research Hub Member role description Click here for the Network Member Role Description

Step 2: Complete the Interest Form Below

Step 3: You will be contacted by the Information and Research Hub Manager to discuss your involvement and discuss training and induction. For further information please email

Researchers: If you are researcher and would like support from the CLDF Research Hub and our hub members, please visit the Information for Researchers section of the page or email

Research Hub Network Member Interest Form

    Tell us about yourselfA young person with liver diseaseFamily member of a child with liver diseaseOther
    Acute Liver FailureAlagille SyndromeAlpha-1 Antitrypsin DeficiencyAutoimmune Liver DiseaseBaby JaundiceBiliary AtresiaCongenital Hepatic FibrosisCystic Fibrosis and Liver DiseaseGilbert’s DiseaseLiver TransplantationNon-Alcoholic Fatty Liver Disease (NAFLD)Progressive Familial Intrahepatic Cholestasis (PFIC)Wilson’s DiseaseTransitionSigns and SymptomsTreatments and MedicationPortal HypertensionCompliance and AdherenceSurvivorshipQuality of LifeOther
    Face-to-face meetings and focus groupsEmail and online participationVideo call participation e.g SkypePostInterviews over the phone

    What would you like to hear from us about and how?

    Please note:
    1. We don’t send much post so if you only choose one option email would be best.
    2. We’ll update all contact preferences on our systems within 21 days of receiving your request.

    By postBy emailBy phone (a call from a member of the CLDF team)By text/SMSAll of the aboveDon't contact
    By postBy emailBy phone (a call from a member of the CLDF team)By text/SMSAll of the aboveDon't contact

    Your details are safe with us

    We'll always store your personal details securely. We'll use them to provide the service that you have requested and communicate with you in the way(s) you have agreed to. Your details may also be used for analysis purposes, to help us provide the best possible service. We won't sell your details to anyone else and we'll only share them with suppliers working on our behalf, or if required to do so by law. For full details please see our Privacy Policy. It's important that you read this policy to understand what information we hold, how we use it and what your rights are.