Rare Disease Group

  1. Define the prevalence of lupus nephritis in the UK and its comorbidities.
  2. Provide valuable epidemiological data to help inform reclassification of lupus nephritis histology and provide long term cardiovascular and renal outcome data.
  3. Develop treatment outcomes studies to help inform UK treatment protocols.
  4. Develop clinical trial proposals.
  5. Facilitate patient recruitment to clinical trials.

The group is looking to become involved with a European initiative to reclassify lupus nephritis.

There are multiple Industry led clinical trials ongoing including three recent positive phase three trial data reported - members of the group have strong links with industry and are investigating potential industry collaboration for long term outcome data and sourcing patients for future clinical trials.

This RaDaR RDG will be a comprehensive lupus nephritis registry (currently no such UK registry exists) aiming to complement and not duplicate existing registries, and will offer the potential for collaborative studies with other registries.

Lupus UK (the leading national charity focused on supporting Lupus patients) are very supportive of a Lupus Nephritis RaDaR group and we will collaborate with them to increase awareness.

Aligned existing RaDaR Rare Disease Groups include:

  • Pregnancy and Chronic Kidney Disease
  • Nephrotic Syndrome
  • Membranous Nephropathy

TBC

LUPUS UK is a national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. Lupus UK arranges medical talks, publishes local newsletters, sets up local occasions and organises fundraising events. It also produces a national magazine with lupus articles, letters, reports, and photographs, and operates a strong grant programme for research purposes and welfare.

TBC

RDG Lead(s)
  • Dr Rachel Jones, Cambridge University Hospitals, Addenbrooke’s Hospital
Patient representative(s)
  • Mr Paul Howard, Lupus UK, patient charity
  • Mrs Debbie Clark
Other members
  • Prof Liz Lightstone, Imperial College London
  • Prof David Jayne, University of Cambridge, Addenbrooke’s Hospital
  • Dr Peter Hewins, QEH Birmingham
  • Dr Michael Robson, Guy’s Hospital London
  • Dr Ruth Pepper, Royal Free Hospital
  • Dr Jonathan Dick, Kings College Hospital
  • Dr Chee Kay Cheung, University of Leicester
  • Mr Hugo Tordesillas, Lupus Specialist Nurse, Addenbrooke’s Hospital

None declared as at 2023.