Rare Disease 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
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.
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).
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
- Professor Jonathan Barratt, Professor of Renal Medicine, University of Leicester, RDG Lead
- Dr Chee Kay Cheung, Consultant Nephrologist and Honorary Senior Lecturer, John Walls Renal Unit, Leicester General Hospital, RDG Deputy Lead
- Ms Margaret Bell, Patient Representative
- Mr Alister Humphries, Patient Representative
- Professor Colin Geddes, NHS Greater Glasgow and Clyde
- Dr Sian Griffin, Consultant Nephrologist and Honorary Senior Lecturer, University Hospital of Wales, Cardiff
- Professor Bruce Hendry, European Lead for Nephrology at Travere Therapeutics, Industry Representative
- Dr Richard Hull, Consultant Nephrologist, St George's University Hospitals NHS Foundation Trust
- Dr Nicholas Medjeral-Thomas, Consultant Nephrologist and Clinical Research Fellow, Centre for Inflammatory Disease, Department of Medicine, Imperial College London
- Dr Louise Oni, Senior Lecturer in Paediatric Nephrology, University of Liverpool, Paediatric Representative
- Professor Ian Roberts, Department of Cellular Pathology, John Radcliffe Hospital, Oxford, Renal Pathology Representative
- Dr Haresh Selvaskandan, Kidney Research UK Clinical Research Fellow, University of Leicester, Trainee Representative
- Professor Smeeta Sinha, Salford Royal NHS Foundation Trust
- Dr Lisa Willcocks, Consultant Nephrologist, Cambridge University Hospitals NHS Foundation Trust
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.