Continually improving standards of care: The UK Renal Registry as a translational public health tool

Abstract

A disease registry uses observational study methods to collect defined data on patients with a particular condition for a predetermined purpose. By providing comprehensive standardised data on patients with kidney disease, renal registries aim to provide a 'real world' representation of practice patterns, treatment and patient outcomes that may not be captured accurately by other methods, including randomised controlled trials. Additionally, using registries to measure variations in outcomes and audit care against standards is crucial to understanding how to improve quality of care for patients in an efficacious and cost-effective manner. Registries also have the potential to be a powerful scientific tool that can monitor and support the translational process between research and routine clinical practice, although their limitations must be borne in mind. In this review, we describe the role of the UK Renal Registry as a tool to support translational research. We describe its involvement across each stage of the translational pathway: from hypothesis generation, study design and data collection, to reporting of long-term outcomes and quality improvement initiatives. Furthermore we explore how this role may bring about improvements in care for adults and children with kidney disease.

Keywords: Kidney disease; Registry; Standards; Translational research.

Fig. 1

Potential roles for renal registries within the translational health research pathway. Red arrows Aspects of pathway where renal registries can have an impact. R&D Research and Development. Reproduced with permission from the UK Renal Registry

Fig. 2

PatientView example screens (adult test patient). Reproduced with permission from the UK Renal Registry

Fig. 3

Flow diagram of data collection within the UK Renal Data Collaboration (UKRDC). BAPN British Association For Paediatric Nephrology