Glomerulonephritis, lupus nephritis
and vasculitis clinical study group
The kidney can be damaged by activation of the immune system which then attacks healthy body tissue. This results in antibodies and other immune elements targeting the kidney and causing inflammation, 'nephritis'. The filters of the kidney, the 'glomeruli', are typically affected hence the term 'glomerulonephritis'.
There are several patterns of glomerulonephritis with differing risks of destroying the kidney which results in end stage renal disease. Treatment strategies are usually aimed at reducing inflammation and controlling the abnormal immune activation.
Who we are
Our group is Chaired by Dr Rachel Jones, who is Consultant in Nephrology and Vasculitis at Addenbrooke’s Hospital, Cambridge, and Professor Jon Barratt, who is Professor of Renal Medicine at the University of Leicester.
Membership is informal and inclusive, with a current mailing list of 147 members which includes two patients, representation from 47 renal units as well members from Kidney Research UK. Because of the diversity of and rarity of glomerular diseases, research themes have evolved around specific glomerular disease areas linking into associated RaDaR and UK and Ireland Vasculitis Rare Disease (UKIVAS) groups. A strong educational component has developed within the CSG, with national educational meetings led by Dr Allyson Egan, University of Cambridge and the Imperial Group.
All consultants and trainees plus anyone with an interest in glomerular disease are welcome!
- Identifying areas of unmet need for research activity.
- Developing new studies; registry, biomarker and clinical trials.
- Acting as a portal to promote engagement in Glomerulonephritis and Vasculitis studies.
- Communicating with patient groups.
- Developing collaborations with industry and academic partners.
- Providing peer review for project proposals.
- Supporting funding applications.
- Providing an education and training programme.
Our focus is on membranous nephropathy, minimal change and FSGS, IgA nephropathy, vasculitis, lupus nephritis and C3GN.
Our impact and achievements:
- A recent increase in industry and academic-funded GN clinical trials allows patient access to new therapies in trial centres.
- Patients in England now have access to rituximab for membranous nephropathy through national commissioning.
- A dedicated patient website and Facebook page with patient information and access to research studies in IgA nephropathy.
- The publication of the first edition of a new open access journal 'Glomerular Diseases' . This journal is testament to the level of academic interest in glomerulonephritis and is recognition of the importance of research in this field.
Our challenges and evidence gaps:
- Investigating new therapies in rare diseases means small patient numbers.
- Expensive biologics for NHS patients hence difficulties accessing treatments.
- Limited academic funding calls for rare diseases.
- Trial design eg in lupus nephritis (as it is a heterogeneous disease and
steroid use confounds results) and in membranous nephropathy (a
proportion of patients will get better without treatment.)
- We need randomised clinical trial data for rare glomerular diseases and long-term outcome data with newer therapies.
Studies in development:
- SAVANNA- steroid minimization in ANCA vasculitis. Led by Alan Salama. HTA expression of interest submitted.
- Lupus nephritis RaDaR group proposal to be submitted. Led by Rachel Jones.
- ENDURRANCE – exploring durable remission with rituximab in ANCA vasculitis. Led by Stephen McAdoo and Ono Teng.
For more information and to find out about getting involved as a patient or researcher, contact: