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Around three million people in the UK have kidney disease

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Glomerulonephritis Clinical Study Group

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 jointly chaired by Professor Liz Lightstone, Professor of Renal Medicine and Honorary Consultant Physician at Imperial College London and Imperial College Healthcare NHS Trust Renal and Transplant Centre in London’s Hammersmith Hospital and Dr Rachel Jones, who is Consultant in Nephrology and Vasculitis at Addenbrooke’s Hospital, Cambridge.

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!

Professor Liz Lighstone
Professor Liz Lighstone
Dr Rachel Jones
Dr Rachel Jones

Our aims:

  • 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 meetings:

Advancing Research in Renal Autoimmunity
Thursday 23 January 2020, Downing College, Cambridge

We have partnered with Cambridge University, Experimental Medicine Immunotherapeutics and are hosting a one day collaborative symposium for industry and academia. The programme will:

  • promote industry-academic interactions and collaborative working relationships in autoimmune renal disease
  • discuss known and potential pathogenic pathways and treatment targets
  • discuss approaches to streamlining research and funding by utilisation of pathways and targets that cross cut disease areas

Nephrologists with an interest in glomerular disease research are all welcome! Agenda and registration page here.

Please note, you will need to register on the EMIT website before you can register for the event.

Other meetings:

  • Biannual CSG meetings
  • Small project specific group meetings.
  • National educational meetings (eg Frontiers in Glomerulonephritis, Royal Society of Medicine, March 2019; Short Course on Glomerular Disease, Imperial, Dec 2019).

 

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.

 

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.

Our studies:

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.

Got a question? Get in touch.

For more information and to find out about getting involved as a patient or researcher, contact:

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