ADPKD Patient Registry
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the world's most common inherited kidney disease. Between 1 in 500-1,000 people are affected by ADPKD. In the UK, ADPKD accounts for approximately 1 in 10 kidney patients on dialysis, and 1 in 8 people with a kidney transplant.
In February 2016, the first national database or registry of ADPKD patients - children and adults - was launched. It is part of the National Registry of Rare Kidney Diseases (RaDaR), which is gathering information on children and adults with a range of rare and uncommon kidney diseases, including ADPKD and ARPKD.
If you already attend an adult hospital for your ADPKD or your child attends one of the 13 UK hospitals that specialises in paediatric nephrology, you may have been asked to register or to register your child. If you have not been asked, please speak to your renal doctor or nurse on your next visit.
By bringing together all the knowledge about ADPKD patients in one place, we hope this will improve understanding of the natural history and progression of children, young people and adults with ADPKD. By recording large numbers of known patients on a single registry, this will encourage research and speed up studies or clinical trials into treatments. RaDaR collaborates with a number of international doctors, researchers, and registries. By joining forces with those groups, we can all work together, faster, to help improve the lives of those affected by ADPKD.
The PKD Charity has provided a grant to RaDaR to assist with the development of the ADPKD Registry.
Find out more about the ADPKD registry on the RareRenal website http://rarerenal.org/radar-registry/
All the information on RaDaR is held securely and is not passed to anyone without your consent. You will get a special access to view your information at any time. Your GP or your child's GP will be told about RaDaR and you and your doctors will get updates from time to time about the Registry work.