LifeArc Project

As part of the larger LifeArc project and building on the Minimum Digital Living Standard (MDLS) developed by the research team, this study explores the digital in/exclusion of households with children and young people with rare kidney conditions and their digital engagement with healthcare services and researchers, practitioners and providers.

Based on a mixed methods approach including online surveys, focus groups and semi-structured interviews, it aims to identify the digital needs of the aforementioned households and barriers to their digital engagement. 

The LifeArc - Kidney Research UK (KRUK) Centre for Rare Kidney Disease will establish a UK Kidney Ecosystem using the strong, collaborative network of the British Association of Paediatric Nephrology (BAPN) that cares for all children and young people with rare kidney diseases across 13 sites in the UK. The project prioritises the most vulnerable population of patients and is geographically representative. It is embedded within the larger, UK Kidney Association that includes fully supportive, highly experienced colleagues and a legacy of tightly governed infrastructure. The Centre plan is the result of extensive scoping with the united ambition to transform the speciality into a perpetual research environment with a speciality-wide trial accelerator platform. It will use the paediatric population as a model, due to the smaller numbers, higher proportion of rare kidney diseases and extremely collaborative network, with the long-term vision to upscale into adults with rare kidney diseases and subsequently common kidney diseases if feasible.