The UK Renal Registry (UKRR) is part of the Renal Association, a not for profit organisation registered with the Charity Commission (Registered in England No. 2229663).
We are recognised as having one of the very few high quality clinical databases open to requests from researchers. The UKRR collects, analyses and reports on data from 71 adult and 13 paediatric renal centres. Participation is mandated in England through the NHS National Service Specification and the Chief Executive of each Trust is responsible for adherence to this contract.
We are principally funded through an annual capitation fee levied on renal replacement therapy (RRT) patients; this currently (2016) stands at £27.50 per patient in England and £22.50 in Wales and Northern Ireland , levied as separate fees for the UKRR and PatientView on dialysis and transplant patients and representing less than 0.08% of the average annual cost of treating these patients. Some projects and collaborations receive funding through linkages with other organisations or grants for research and development. The detailed accounts of the UKRR are provided to the Trustees and a financial report is given at the Annual General Meeting of the Renal Association as required by law.
The Renal Registry Data Set Specification (RRDSS) is available in the Data area of this website and it defines the data we currently expect to collect. The data are collected on a quarterly basis via an automatic download from renal unit databases. This process will change significantly in the future with the launch of the UK Renal Data Collaboration (UK RDC). The data are published annually in the UK Renal Registry Annual Report. The report is used by a variety of stakeholders but its principal purpose is to act as a source of data for audit and benchmarking against the quality of care standards created by the Renal Association and other organisations.
The sources of information (data and reports) held by the UKRR are a shared resource and are used to develop further research into kidney disease and improve the quality of care for renal patients. Please see Projects for how the UKRR is currently driving forward renal related research.
Appendix A ‘The Registry Rationale’ of the current annual report provides further information relating to UKRR activity.