ARPKD Patient Registry
Autosomal Recessive Polycystic Kidney Disease (ARPKD) is the rare and often severe form of polycystic kidneys. It is responsible for up to half of babies and children with cystic kidneys in paediatric hospitals.
The natural history and progression of ARPKD is poorly understood and there are currently no preventive treatments. Also, patients are scattered around the UK, making it difficult to get sufficient numbers of individuals to take part in research.
Until recently there was no national database of ARPKD patients, so the Renal Association of kidney doctors has developed the National Registry of Rare Kidney Diseases (RaDaR), which is gathering information on children and adults with a range of rare kidney diseases, including ARPKD.
If your child attends one of the 13 UK hospitals that specialises in Paediatric Nephrology, you may have been asked to register your child. If you have not been asked, please speak to the renal doctor or nurse on your next visit.
If you are an adult with ARPKD and see an adult nephrologist, you can also be registered. Speak to your doctor or nurse on your next visit.
By bringing together all the knowledge about ARPKD patients in one place, we hope this will improve understanding of how ARPKD affects your child or yourself. With larger numbers of known patients on a single database such as RaDaR, 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 ARPKD.
The PKD Charity has provided a grant to RaDaR to assist with the development of the ARPKD Registry.
Find out more about RaDaR here 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.