National Registry of Rare Kidney Diseases (RaDaR)

Research summary

RaDaR provides an infrastructure to capture both generic and disease-specific clinical information and to collate longitudinal information. Patients and clinicians can view information about the conditions covered by RaDaR on RareRenal.org, which links closely with RaDaR. RaDaR was set up following an initiative of the Medical Research Council (2008) to develop cohorts of wellcategorized patients for translational research. RaDaR is a development of the Renal Association and is operated by the UK Renal Registry (UKRR). The governance structure is described below. RaDaR is web-based and data is held on a secure server. Data entry is overseen by the clinician with responsibility for the patient - usually their nephrologist. Data from RaDaR will be made available to researchers investigating specific rare diseases in accordance with the operating policy and the RA Data Sharing Policy enforced by the Rare Disease Committee in collaboration and operated by UKRR employees. (see below). RaDaR is predominately aimed at UK patients; however international recruits who are consented in the UK by an NHS hospital are also eligible, subject to local approval.

Principal Investigator

Dr Edward John Sharples

Contact us

Email: osprea@wrh.ox.ac.uk

IRAS number

349779