The IgAN research group in Leicester has been given £2.7 million to establish the world’s first international registry of IgA Nephropathy patients. The registry will follow the same format as RaDaR and will collect clinically characterised data from IgA Nephropathy patients across Europe, Asia and South America.
University Of Leicester’s Press Release
The Spring Issue of the RaDaR Newsletter features the latest recruitment updates, details of an ADPKD research study and an advert for a forthcoming rare disease patient day in Birmingham.
The National Registry of Rare Kidney Diseases (RaDaR) recruited its 10,000th UK patient in January 2017. RaDaR is an initiative by UK kidney specialists (the Renal Association). It is designed to pull together information from patients who have certain rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.
This work is done in partnership with patients. Where the research leads to practical benefits, such as better diagnosis, treatments or general advice this will be publicised on this website.
Further details about the registry can be found here.
Many thanks to the UK Renal Registry, the PKD Charity, British Kidney Patient Association and Kidney Research UK for supporting this valuable initiative.
It is a fantastic achievement and a testament to the hard work of all the renal units and Rare Disease Groups involved.
Congratulations and here’s to the next 10,000!