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
Patient Information Day – 24th November 2018
The event was streamed live on Facebook with talks available on the Leicester IgA Nephropathy YouTube channel
The international version RaDaR for IgAN is expected to start recrutign in ealry 2019.
IgAN has been included in the NIHR BioResource and we are recruiting patients with IgAN and IgA vasculitis to the BioResource and RaDaR together, linking the RaDaR number with the NIHR BioResource number to allow cross registry working.
- 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.
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
- 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.
Written by the IgA Nephropathy Rare Disease Group