The UK Kidney Research Consortium
The UK Kidney Research Consortium (UKKRC) was established in 2007 and is jointly hosted and 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 current Chair (2017-2019) is Professor Phil Kalra (Academic Vice-president, Renal Association) and Kidney Research UK provides a permanent secretariat for the Consortium.
The overall mandate is to facilitate the best collaborative clinical research for health in kidney disease.
Full Terms of Reference for the UKKRC PDF Download
Meetings of the UKKRC are held twice a year in conjunction with the meeting of the NIHR Clinical Research Network Renal Disorders Specialty Group.
UK Renal Research Strategy
In October 2013 the ‘Kidney Health: Delivering Excellence’ report was published which set out sixteen ambitions, one of which recommended that a research strategy for kidney disease was developed. The UKKRC took forward this ambition by establishing a Steering Group in February 2014 , charged with undertaking the development of the first ever UK Renal Research Strategy.
This project was managed by Kidney Research UK, as secretariat for the Consortium, and involved the steering group undertaking a number consultation phases with the renal and wider research stakeholder communities.
This first UK Renal Research Strategy was launched on 14 April 2016.
This strategy details a number of aims with associated 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 create and support the next generation of researchers.
Concerted action from many parties over the next five to ten years will be needed to realise these Aims, and through collaborative investment and efforts will achieve maximum impact to benefit the health and welfare of kidney patients and those at risk of kidney disease.
Click to view the UK Renal Research Strategy.
Clinical Study Groups
One of the first steps of the UKKRC was to establish a platform for Clinical Study Groups (CSGs) for 12 renal medicine specialities. Each group has a remit for generating a portfolio of clinical studies that can and should be undertaken in the UK where there is a clear need for more evidence.
Membership of the CSGs includes representation from the multi-professional team and wherever possible, trainees and patient/carer representatives. The CSGs leads report at each meeting of UKKRC.
Disease areas and current group leads:
Rare 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 17 RDGs; each has an inclusive membership including patient, family or carer representatives.
The groups are affiliated with the UK Registry for Rare Kidney Diseases (RADAR), publishing online patient/clinician information and developing best-practice care pathways.
This initiative provides a unique resource for future research in rare renal diseases. The chair of the Renal Association rare disease committee (currently Dr Detlef Bockenhauer) reports to the UKKRC meetings.
For further details visit nww.radar.nhs.uk (NHS computers only) and www.rarerenal.org
Renal Clinical Research Skills Forum (RCRSF)
The RCRSF is a UK-wide initiative to provide a practical and academic support network for Renal Trainees or Consultants with an interest in developing clinical research ideas from inception to completion and provides advice on study design, research governance, and analytical skills. The forum is supported by the Renal Association and sends representatives to the CSG meetings. To find out more, contact firstname.lastname@example.org
Renal Disorders Speciality Group
Kidney Research UK, The Renal Association and British Renal Society also actively support and engage with the membership of the UK’s National Institute of Health Research (NIHR) Renal Disorders Specialty Group.
This group oversees research relating to renal medicine and supports a wide range of research studies such as those which look at anaemia, chronic kidney disease and genetic disorders.
A major remit is to review potential studies in renal disorders, particularly from Industry, for inclusion on the UK Clinical Research Network (UKCRN) portfolio. All portfolio studies are eligible for infrastructure support from the UKCRN as well as additional support from the 15 Local Clinical Research Networks that cover the length and breadth of England to ensure they are delivered successfully in the NHS for the benefit of patients. For further details visit www.crn.nihr.ac.uk/renal
Patient and Public Involvement (PPI)
The promotion of PPI at all stages of research is an important area for all stakeholders. In addition to patient/carer representation on each of the Clinical Study Groups, membership of the UKKRC includes the Chairman of the National Kidney Federation and a number of other patient/carer representatives.
For further information about the UK Kidney Research Consortium contact: UKKRC@kidneyresearchuk.org