Registries are databases that bring together all the medical information about ADPKD and ARPKD patients in one place. This knowledge improves understanding of the natural history and progression of children, young people and adults with PKD. Having this all in one place will encourage research and speed up studies or clinical trials into treatments.

ADPKD family

ADPKD Patient Registry

If you already attend a hospital for your ADPKD care or your child attends one of the UK hospitals specialising in paediatric nephrology, you may have been asked to register yourself or to register your child. If you have not been asked, please speak to your kidney doctor or nurse on your next visit.

For information on how to join the ADPKD Registry read/download the Patient Information Sheets and Consent Forms . 

Or email us if you have further questions.

All the information on the Registry 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 the Registry, and you and your doctors will get updates from time to time.

ARPKD family

ARPKD Patient Registry

If your child attends one of the 13 UK hospitals specialising in Paediatric Nephrology, you may have been asked to register your child. If you have not been asked, please speak to the kidney doctor or nurse on your next visit.

If you are an adult with ARPKD and see an adult kidney doctor (nephrologist), you can also be registered. Speak to your doctor or nurse on your next visit.

For information on how to join the ARPKD Registry, read/download the Patient Information Sheets and Consent Forms.

Or email us if you have further questions.

All the information on the Registry 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 the Registry, and you and your doctors will get updates from time to time.


Polycystic Kidney Disease Charity
91 Royal College St, London NW1 0SE
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