The UK Kidney Association manages two databases:
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UK Renal Registry (UKRR) (comprises several datasets)
- The UK Renal Registry was set up in 1995 to record and analyse longitudinal health data about children and adults with kidney disease in the UK for audit, quality improvement and research purposes.
- In 2019, information was collected on 70,000 people on kidney replacement therapy and over 500,000 people who triggered an electronic alert for an acute kidney injury.
- The information collected includes demographic, clinical and patient-reported data.
- Clinical data flow predominantly from the UK’s kidney centres and hospital laboratories, and patient-reported data are captured via surveys. The UKRR database is linked with a number of other health databases, including NHS Blood and Transplant, NHS Digital, Public Health England and NHS Wales Informatics Service.
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National Registry of Rare Kidney Diseases (RaDaR)
- The National Registry of Rare Kidney Diseases (RaDaR) was set up with funding from Kidney Care UK and Kidney Research UK and is supported and coordinated by the UK Kidney Association.
- RaDaR focuses specifically on rare renal conditions and holds detailed information on people with these conditions, including where they live, what treatment they are receiving, relevant blood and imaging results and how they are responding to treatment.
- As of 1st February 2024, there were 32,596 UK patients in RaDaR from 109 sites.
