ARPKD – RDG

  • Aims of the Group

    The Autosomal recessive polycystic kidney disease (ARPKD) Rare Disease Group (RDG) aims to:

    • Develop best practice guidelines in regards to the treatment of ARPKD
    • Provide better patient information and support
    • Develop international collaborations to enable the above aims
    • Support research, in collaboration with international groups, into basic science, translational, psychosocial and clinical trials
  • Current Activities

    The PKD Charity are organising an ARPKD Family Day on Saturday, 22th July 2017 at Uffculme Centre, Queensbridge Road, Moseley, Birmingham B13 8QY from 10 am – 3pm.

    The event will include:

    • Keynote talks about ARPKD from the experts
    • Roundtable discussions between parents, patients, doctors & scientists
    • Supervised entertainment & activities for children and young people at the Marvellous Superstar Summer Party organised by Birmingham Children’s Hospital

    Travel bursaries are available.

    ARPKD Family Info Day 2017 Flyer

    The fifth ARPKD Patient Information Day took place on Saturday 16th July 2016 at Kingston University, Surrey. For more information about the event please visit the PKD Charity website.

    The fourth ARPKD Patient Information Day was held on Saturday 11th July 2015 at Leeds General Infirmary. Details of the event and copies of the presentations are available here.

    The third ARPKD Patient Information Day was held on Saturday 28th June 2014 at the Institute for Child Health, Great Ormond Street Hospital, London. Details of the event and copies of the presentations are available here.

    The second UK ARPKD Patient Information Day was held on Saturday 6th July 2013 at Birmingham Children’s Hospital. Copies of the presentations are available here, along with comments from attendees.

    Details of the first Patient Information Day, held in 2012, can be found here.

    Guideline development

    An International Consensus Meeting took place in Washington DC in May 2013 and was attended by several members of ARPKD RDG. All ARPKD literature has been reviewed and guidelines have been drawn up for perinatal, renal, hepatology and psycho-cognitive aspects of ARPKD. To view please click here.

  • International Links

    We have established international collaborations with Prof Lisa Guay-Woodford (US Hepato/Renal Fibrocystic Diseases Translational Resource) and Dr Max Liebau (ARegPKD  Europe).

  • Patient Support Groups

    The ARPKD RDG works closely with the PKD Charity, led by Tess Harris.

    There is also a very active Facebook group that users can request to join.

  • Reports
  • Group Members
    • Prof Carsten Bergmann, Professor of Human Genetics, Germany
    • Dr Detlef Bockenhauer, Great Ormond St Hospital, London
    • Alasdair Brown, Arran Brown Rainbow Foundation
    • Professor Stewart Fleming, Professor of Cellular and Molecular Pathology, University of Dundee
    • Dr Daniel Gale, Clinical Lecturer in Nephrology, London
    • Dr Paraskevi Goggolidou, Kingston-upon-Thames
    • Tess Harris, Chair of PKD Charity, President of PKD International and Director of Ciliopathy Alliance, London
    • Prof. Deirdre Kelly, Consultant Paediatric Hepatologist, Birmingham Children’s Hospital
    • Dr Larissa Kerecuk, Dept. Paediatric Nephrology, Birmingham RDG Lead
    • Professor Robert Kleta, Chair of Nephrology, University College London
    • Max Liebau, Paediatric Nephrologist, Cologne, Germany representing ARegPKD
    • Dr Patrick McKiernan, Consultant Paediatric Hepatologist, Birmingham Children’s Hospital
    • Dr. Richard Sandford, University Reader in Renal Genetics, Addenbrooke’s Hospital
    • Dr John Sayer, Institute of Genetic Medicine, Newcastle University
    • Dr Roslyn Simms, Clinical Research Fellow, Newcastle University
    • Arie Stangou, Consultant Hepatologist, University Hospital Birmingham
    • Prof Karlijn van Stralen, Coordinator ESPN/ERA-EDTA Registry
    • Prof. Patricia Wilson, Professor of Medicine, London
    • Paul Winyard, Head of the Nephro-Urology Research Unit, ICH
ARPKD RDG Version 9 updated June 2017
Written by the ARPKD Rare Disease Group