What is RadaR? And Why Does It Matter for PKD?
RaDaR—the National Registry of Rare Kidney Diseases—is a UK Kidney Association initiative launched in 2010 to collect detailed, long-term data from patients with rare kidney conditions, including autosomal dominant and recessive polycystic kidney disease (ADPKD and ARPKD).
It is the largest rare kidney disease registry in the world, with over 37,000 patients recruited from more than 100 UK centres. RaDaR brings together secure, anonymised clinical information—such as demographics, test results, treatments, dialysis and transplant history, and genetic data—from multiple hospitals into one invaluable resource.
The Benefits of RaDaR for PKD Families
For the PKD community, RaDaR is particularly powerful. It already contains records for over 9,000 adults and children with ADPKD and ARPKD, creating a goldmine of insight for researchers while keeping patient privacy fully protected.
- Deepens understanding — Tracks how PKD progresses across ages and patient groups, revealing patterns and outcomes.
- Speeds up research — Supports clinical trials and new therapies through large-scale, real-world data.
- Informs healthcare planning — UCL-led studies using RaDaR data show people with rare kidney diseases are 28 times more likely to need kidney replacement therapy compared to general CKD patients—evidence that drives the case for targeted care.
How to Join (And What to Do If You Can’t… Yet)
- Ask your kidney doctor (nephrologist) or nurse at your next appointment if your hospital has an active RaDaR programme.
- Alternatively, email [email protected] with your hospital’s name to find out your options.
Not every NHS hospital recruits to RaDaR—but your interest can help change that. Joining RaDaR benefits you today by connecting you to the latest developments, and it benefits the entire PKD community for years to come by shaping research, care, and treatment.
If you would like to speak to us about what support we can offer you or a loved one, please visit PKD Support or contact us today and speak to a member of our team.
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