IgA Nephropathy – RDG

  • Aims of the Group

    The IgA Nephropathy (IgAN) Rare Disease Group aims to:

    • collate avaliable information on IgAN and develop new information for both patients and carers
    • implement a communications strategy for the wider renal community about all aspects of the RDG’s work programme
    • develop a strategy for patient recruitment to clinical  trials in IgAN
  • Current Activities

    As the UK IgAN patient cohort increases in size, the RDG will be planning studies examining the genetic, immunological and pathological factors that lead to the development of IgAN. We will also be studying how we can use social media to improve communication with patients and better understand the important issues facing people with IgAN in the UK and across the world.

  • International Links

    The International IgAN Network (IIgANN) runs international symposia on IgAN, usually every other year. Its website contains information for patients and carers, and research material for professionals. Past and present leadership of IIgANN includes members of the proposed RDG (Jonathan Barratt, John Feehally).

  • Patient Support Groups

    A UK IgA Nephropathy Patient Support Group has been established, which coordinates the UK IgAN Patient Information Day. Details of the group can be found on the IgAN Support UK Facebook Forum which is available to all UK patients with IgAN.

  • Reports

    Articles

    Selvaskandan, H., Dillon, M. & Barratt, J. IgA Nephropathy: driving innovation with a rare renal disease registry, J. Kidney Care. 2017 Jul; pp 205–211. https://doi.org/10.12968/jokc.2017.2.4.205

    Reports

    IgA Nephropathy RDG Report 2015 – 2016

    IgA Nephropathy RDG Report 2016 – 2017

    IgA Nephropathy Information Day Report 2016

  • Group Members
    • Dr Jonathan Barratt, Consultant Nephrologist, University Hospitals of Leicester, RDG Lead
    • Ms Margaret Bell, Patient Representative
    • Professor Paul Brenchley, Professor of Renal Immunology, Manchester Royal Infirmary
    • Professor Terry Cook, Professor of Renal Pathology, Imperial College, London
    • Dr Jan Dudley, Consultant Paediatric Nephrologist, Bristol Royal Hospital for Children
    • Professor John Feehally,  Emeritus Consultant Nephrologist, University Hospitals of Leicester 
    • Dr Danny Gale, Clinical Lecturer in Nephrology, UCL Centre for Nephrology, London
    • Dr Colin Geddes, Consultant Nephrologist, Glasgow Renal and Transplant Unit
    • Nick Medjeral-Thomas, Lecturer in Nephrology, Imperial College, London
    • Dr Karen Molyneux, Senior Research Scientist, University of Leicester
    • Matthew Pickering, Professor of Rheumatology, Imperial College, London
    • Charles Pusey, Professor of Renal Medicine, Imperial College, London
    • Professor Ian Roberts, Department of Cellular Pathology, John Radcliffe Hospital, Oxford
    • Professor Caroline Savage, Vice-President and Head Experimental Medicine Unit, GlaxoSmithKline
    • Mr Philip Smith, Patient Representative
    • Prof Fred Tam, Consultant Nephrologist, Imperial College, London
  • Disclosure of Conflicts of Interest

    Professor Caroline Savage is Vice-President and Head of the Experimental Medicine Unit at GlaxoSmithKline.

    Fred Tam is the chief investigator of the randomized controlled trial of Syk inhibitor in IgA nephropathy. He has received research project grants from AstraZeneca Limited, Baxter Bioscience, Boehringer Ingelheim Limited and GSK, and has consultancy agreements with Baxter Bioscience, MedImmune and Rigel Pharmaceuticals.

IgA Nephropathy RDG Version 7 Updated September 2017
Written by the IgA Nephropathy Rare Disease Group