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 hold regular Patient Information Days around the country. The most recent was in Birmingham in July 2017. Details of future events will be posted here when they are announced.

  • 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

    Publications

    ECRD 2018 ARPKD Poster – Maria Kokocinska, Nephrology & Rare Diseases Research Coordinator, Birmingham Children’s Hospital

    PNA 2016 ARPKD Poster – Maria Kokocinska, Nephrology & Rare Diseases Research Coordinator, Birmingham Children’s Hospital

    UK Kidney Week 2017 ARPKD Poster – Maria Kokocinska, Nephrology & Rare Diseases Research Coordinator, Birmingham Children’s Hospital

    Mekahli et al 2016 Kidney Versus Combined Kidney and Liver Transplantation in Young People with Autosomal Recessive Polycystic Kidney Disease: Data from the European Society for Pediatric Nephrology/European Renal Association2European Dialysis and Transplant (ESPN/ERA-EDTA) Registry. Am J Kidney Dis. 2016

    PKD Charity leaflet Autosomal Recessive Polycystic Kidney Disease (ARPKD) – a guide for parents

    Reports

    ARPKD RDG Report 2012

    ARPKD RDG Report 2013

    ARPKD RDG Report 2014

    ARPKD RDG Annual Report 2015 – 2016

    ARPKD RDG Annual Report 2016 – 2017

    ARPKD RDG Annual Report 2017-18

  • 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, Wolverhampton University
    • 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, Sheffield University
    • Arie Stangou, Consultant Hepatologist, University Hospital Birmingham
    • Prof Karlijn van Stralen, Coordinator ESPN/ERA-EDTA Registry
    • Prof. Patricia Wilson, Professor of Medicine, London Interim RDG Lead
    • Paul Winyard, Head of the Nephro-Urology Research Unit, ICH
  • Disclosure of Conflicts of Interest

    Funding support for the 2012 patient Information Day was provided by Amgen, Astellas and Fresenius

    Individual members’ conflicts of interest are listed below.

    Name

    Conflict of Interest

    Detlef Bockenhauer

    Received consultancy fees from Otsuka

    Danny Gale

    MRC, Rosetrees Trust and St Peter’s Trust

    Paraskevi Goggolidou

    Kingston University and MRC Harwell

    Tess Harris

    Represents charities funded by public donation

    John Sayer

    Glaxosmithkline, KRUK

    Roslyn Simms

    KRUK, MRC
    Aoife Waters

    MRC

    Pat Wilson

    Kidney Research UK, PKD charity UK, Rosetree’s Trust and St Peter’s Trust

ARPKD RDG Version 10 Updated May 2018
Written by the ARPKD Rare Disease Group