Rare Disease Registry
Welcome to International RaDaR - the home page for the International Renal Rare Disease Registry. This resource is based on UK RaDaR, a web based national renal rare disease registry that is now embedded as part of UK renal medicine management and research pathways. UK RaDaR currently has over 20 rare diseases registered, and over 10,000 patients recruited.
The International RaDaR site is designed to use the knowledge and expertise gained from UK RaDaR,to permit international collaborators (clinicians and researchers) to join UK renal rare disease groups, and build extensive patient cohorts both for local and internationally collaborative initiatives.
Data is securely held, anonymised, and governed by both local ethical approvals and UK Renal Registry rules covering data visibility.
Two pilot studies will be the first part of International RaDaR, with the aim of growing the number of diseases included according to enthusiasm from disease groups:
This is funded by the UK Medical Research Council, and involves 4 international sites - AIIMS, Delhi, India; St John’s Medical Centre, Bangalore, India; University of Witwatersrand, Johannesburg, South Africa; Cairo University Children’s Hospital, Egypt.
Kidney disease in Low and Middle income countries (LMICs) is under recognised and severely under resourced. The reasons include lack of clinical expertise, diagnostic capabilities, and even if recognised the means to treat chronic, remitting disease without specialist drugs and technology is rarely possible. On top of this the incidence of one of the commonest types of renal disease (in adults and children), idiopathic nephrotic syndrome (INS), appears considerably higher in LMICs than in the developed world. This is likely contributed to by a combination of infectious triggers and genetic background, though other factors remain unknown.
The biological understanding of glomerular disease has been revolutionised in recent years by study of the glomerular podocyte, the target cell in INS, alongside genetic advances. The field is ripe for translational research on larger patient cohorts to exploit compelling biological hypotheses arising from the discovery science work.
This project will build powerful trans-national cohorts of INS, with collaborative analyses of biomarkers, genetics and patient demographics and disease course.
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