UK Renal Registry 11th Annual Report (December 2008): Chapter 15 The UK Renal Registry, UKRR database, validation and methodology

The UK Renal Registry receives encrypted data extracts quarterly from each centre providing Renal Replacement Therapy (RRT) in England, Wales and Northern Ireland. Summary data is received from the Scottish Renal Registry to allow national statistics to be compiled. Data from patients receiving haemodialysis in satellite units or at home are reported through the main renal centre. Data from patients with functioning kidney transplants are reported through the centre providing routine clinical follow-up. The data are extracted from a variety of IT systems with varying functionality and no common messaging system, necessitating extensive data validation and cleaning prior to analysis. Growing confidence in the analyses since the inception of the Registry in 1995 has allowed de-anonymised centre-specific analyses of all outcomes, including survival, to be published, although incomplete data returns for primary renal diagnosis and comorbidity at start of RRT limit ability to adjust for case-mix.