Skip to main content

Helpline

0300 111 1234

The ADPKD and ARPKD registries

Join the ADPKD
and ARPKD registries

Join the RaDaR registry

The RaDaR National Registry of Rare Kidney Diseases is a UK-wide database that collects medical information on people with rare kidney conditions, including autosomal dominant (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).

By bringing this information together, RaDaR helps researchers better understand how PKD develops and progresses in children and adults. It also supports faster, more effective research and clinical trials into new treatments.

Both ADPKD and ARPKD are supported by RaDaR Rare Disease Groups – teams of clinicians, researchers, and patient representatives working to improve care and quality of life for those affected.

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.

ADPKD Patient Registry

If you receive ADPKD care at a UK hospital—or your child attends a specialist paediatric kidney centre—you may already have been invited to join RaDaR. If not, please enquire about joining.

How to Join

  • Speak to your kidney doctor or nurse to check if your hospital has an active RaDaR programme.
  • If you’re unsure, email [email protected]
    with your hospital’s name to explore your options.
  • Learn more about RaDaR.

Your Information
All data in the RaDar Registry is stored securely and only shared with your consent. You can view your records at any time, and both you and your GP will receive occasional updates.

ARPKD Patient Registry

If your child is treated at one of the UK paediatric kidney centres, you may already have been asked to register them on RaDaR. If not, please enquire about registering.

Adults with ARPKD can also join RaDaR. 

How to Join

  • Speak to your consultant or nurse to check if your hospital has an active RaDaR programme.
  • If you’re unsure, email [email protected]
    with your hospital’s name to explore your options.
  • Learn more about RaDaR.

Your Information
All data in the Registry is stored securely and only shared with your consent. You can view your records at any time, and both you and your GP will receive occasional updates.

Feedback

We welcome feedback on the information provided on this webpage. If you have any feedback regarding the information provided on this webpage, please complete the Feedback Form