Development of the Rare Renal Disease Registry (RaDaR)

Concept

In 2007, some BAPN members, led by Moin Saleem (Bristol) in collaboration with the UK Renal  Registry, responded to an MRC funding call for biomedical registries with an application to pilot a rare disease registry initially focused on glomerular disease in children. The aim was to model a generic system for all rare diseases, which would help end the proliferation of standalone databases and drug company-funded registries. The application was successful, and the project began in 2008. 

UK Rare Renal Disease strategy

At the same time a UK rare renal disease strategy was being developed by an RA/BAPN working party (2010 publication linked at foot of page). The strategy addressed the need to provide expert care for people with rare kidney diseases, as well as promulgating research. A particular clinical challenge was the care of rare disorders of children who with improvements in clinical care were now surviving into adulthood. An example cited was cystinosis: in 2010 there were fewer than 150 adults living with cystinosis, most receiving RRT. How should they have access to disease-specific expertise while for practical reasons, receiving most of their care in their local renal unit?

The strategy also established the principles for a rare renal disease registry (RaDaR).  Patient consent would be required for entry into the registry to be compliant with national data  protection regulations.  Rare Disease Groups (including clinicians, researchers, patients and carers) would be established for each rare disease (or for a group of related diseases). These groups would be responsible for developing disease-specific data fields; for providing expert information for patients and carers, as well as health professionals; and for initiating relevant research projects.

RaDaR takes shape

A small group (Fiona Braddon, Mark Taylor, Neil Turner, Fiona Karet) was formed as part of the 2008 MRC project to establish data fields, website development, governance, group format, data flows, and more. RaDaR was established with additional funding from Kidney Research UK and British Kidney Patients Association (now Kidney Care UK). 

Development  and governance has been overseen  by the RA Rare Disease Committee chaired initially by Mark Taylor, followed by Detlef Bockenhauer (GOS) and since 2018 by Danny Gale (Royal Free). Great care was taken to ensure its sound governance, in particular with regard to privacy and data protection. For organisational and governance reasons RaDaR remains within  the UKKA , alongside the Registry, sharing aspects of its technical platform. From 2016 it has been funded within the capitation fee which also supports the Registry and PatientView.

RaDaR fully fledged

Over years the quantities of data and number of patients in RaDaR have grown enormously, and it has become prominent in publications and international regard. Key elements have been

• Live connections with data – the feed used for patients to see their own results is also used (with patient consent) to provide data for RaDaR. This makes it possible to identify patients who may be suitable for new therapies or research studies.
• Secure analysis – researchers apply to ask questions of anonymised data in RaDaR, but the data does not leave RaDaR.

Further info

• Rare Kidney Diseases: An Integrated Strategy for Patients in the UK 2010 (pdf).  The RA/BAPN Working Party had multiprofessional, as well as patient and carer representation, and was co-chaired by Mark Taylor (Birmingham) for BAPN, and John Feehally (Leicester) for RA. It pre-dated a National strategy for rare diseases published by the Department of Health in 2013.  
• ukkidney.org/rare-renal – the RaDaR and Rare Disease Groups website

Authorship

First published 2023

Last Updated on April 22, 2025 by neilturn