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

Lucy A. Plumb*, Alexander J. Hamilton, Carol D. Inward, Yoav Ben-Shlomo, Fergus J. Caskey

*Corresponding author for this work

Research output: Contribution to journalReview article (Academic Journal)peer-review

2 Citations (Scopus)
247 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)373-380
Number of pages8
JournalPediatric Nephrology
Volume33
Issue number3
DOIs
Publication statusPublished - 28 Jun 2017

Keywords

  • Kidney disease
  • Registry
  • Standards
  • Translational research

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