The UK Kidney Research Consortium
The UK Kidney Research Consortium (UKKRC) was established in 2007 and is jointly supported by the Renal Association, Kidney Research UK and the British Renal Society.
The role of ‘Chair’ rotates biennially between the Chair of Kidney Research UK, the Academic Vice President of the Renal Association and the Vice President (Research) of the British Renal Society.
The aim is to facilitate the best collaborative clinical research for health in kidney disease.
The current Chair (2019-2021) is Professor Jeremy Hughes (Chair of Trustees, Kidney Research UK). Kidney Research UK provide a permanent secretariat for the Consortium.
In these videos produced by the NIHR, Professor Hughes and Michael Nation, Development Director at Kidney Research UK, talk about how the UKKRC and renal research infrastructure support the delivery of complex and innovative clinical trials in the UK.
Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Kidney Disorders Specialty Group.
For further information about the UK Kidney Research Consortium contact: UKKRC@kidneyresearchuk.org.
A paper measuring the impact of the UKKRC was published in Clinical Medicine (2015 Vol 15, No 5: 415–9).
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Renal science networks
Kidney Research UK have led on the development of two renal science networks.
UK Renal Research Strategy
The ‘Kidney Health: Delivering Excellence (2013)’ report recommended that a research strategy for kidney disease was developed. The UKKRC produced the first UK Renal Research Strategy in 2016.
The strategy sets out aims and recommendations which are intended to unite the whole kidney (renal) professional and patient community and to provide information and evidence for funders, policymakers and those helping to support the next generation of researchers.
Through collaborative investment and effort, the strategy aims to achieve maximum impact to benefit the health and welfare of kidney patients and those at risk of kidney disease.
Described as a ‘first of its kind’ in terms of the way it was developed through community collaboration, it stated that “concerted action from many parties over the next five to ten years will be needed to realise these aims.” So, three years on from the launch of the strategy, a progress review was undertaken. The aim of the review was to gather opinions from across our community, reignite the drive to realise our ambitions and ensure the ongoing relevance of the strategy in a changing renal landscape.
Rare Renal Disease Groups
A parallel initiative is the establishment of Rare Disease Groups (RDGs). This initiative is a cornerstone of the Renal Association’s strategy for rare diseases. There are currently 27 RDGs whose members include patient, family or carer representatives.
The groups are affiliated with the UK Registry for Rare Kidney Diseases (RADAR), publishing online patient/clinician information, developing best-practice care pathways, supporting recruitment to, and developing research in rare kidney diseases.
The chair of the Renal Association Rare Diseases Committee (currently Dr Danny Gale) reports to the UKKRC meetings.
Kidney Research UK is represented on the Committee and has invested over £300,000 in the development of the registry and the RDG network.
For further information www.rarerenal.org.