FP911: The History of the UK Paediatric Renal Registry

Introduction and Aims: The UK Renal Registry (UKRR) hosts a paediatric registry, which reports demographic, biochemical and outcomes data on all renal replacement therapy (RRT) patients under 18 years managed in UK paediatric centres. The paediatric registry was formed in 1995 and is entering its 20th year. We aim to describe the history and development of this registry, including challenges faced and its role today.

Methods: All UKRR reports were reviewed to establish timelines. Dr Malcolm Lewis (ML, a paediatric nephrologist who wrote the original database and remains an active subcommittee member) was interviewed to capture the processes and his reflections.

Results: ML had created a local clinical database in Filemaker in 1994. In 1995 a 2 year pilot project with the UKRR began with support from Prof Terry Feest and Dr David Ansell. This led to ML creating a dataset and database that would collect paediatric data, supported by the British Association of Paediatric Nephrology (BAPN). Roche Pharmaceuticals contributed £5000 funding, which was used to buy IT equipment and support travel to the 13 paediatric centres. The first paediatric report was written by ML and reviewed by the BAPN registry subgroup and presented with the second adult report in 1999. Initially all information technology support was done by both ML and Manchester Children’s Hospital renal data manager, Jo Shaw, with data collection shared with local clinical teams until the paediatric registry was moved to the Bristol UKRR offices in 2009 to support integration with the adult registry. A change in census date to conform with adult and European registries was also agreed. The results were initially published as a single chapter in the UKRR annual report, becoming 3 chapters (demography, growth and anaemia) in 2006 and the current format of a demography and biochemistry chapter from 2009. It was at this time that that UKRR registrars became involved in data analysis and report writing. The current processes remained similar until the appointment of a British Kidney Patient Association funded, Kidney Research UK managed research fellow in 2014 with the aim of bringing the adult and paediatric registries closer together.

The process has been challenging at times; the main frustration encountered was the retrograde step of moving from electronic to paper-based returns in 2000, which was intended as a short term step but lasted for the next 13 years.The leading challenges still faced are those of integrating the adult and paediatric databases to facilitate accurate reporting of data for 16-18 year olds, and moving from annual to quarterly returns.

Conclusions: The timeline presented demonstrates that enthusiasm, technology, funding and collaboration were the key components of this registry. The process has evolved from the input of a single individual with UKRR backing to a more integrated approach with better data management and statistical resources, greater information security and an overall more supported registry.

The paediatric registry’s value over time has become providing demographic data and biochemical data comprehensively on each UK paediatric RRT patient and allows benchmarking and comparison to national guidance and standards. It also provides data on trends since 1998, as well as being a research resource and basis for service planning and evaluation.