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
Research
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.
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
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| Patient representative(s) |
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| Other members |
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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.
