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Background <p>Glomerulonephritis (GN) accounts for 20%–25% of the causes of chronic and end-stage kidney disease. The evolving treatment landscape with new targeted immunosuppressants has highlighted the unmet need for equity of access to specialist GN services. Regional networks and multidisciplinary team meetings (MDTs) provide access to clinical expertise, high-cost drugs (HCDs) and clinical trials, facilitating collaborative decision-making and optimal use of therapeutics to improve patient outcomes. Launched in May 2023 in the East of England (EoE), the Eastern Network Kidney Inflammatory Disease MDT (ENKID) provides a regional MDT framework designed to improve access to specialist expertise and HCDs- areas identified as lacking for 59% of nephrologists in a 2024 UK GN service survey.</p> Methods <p>ENKID is led by the specialist vasculitis, lupus and primary GN service in Cambridge. A database build allows secure standardised data collection including referral indications and treatment decisions during fortnightly virtual regional MDTs.</p> Results <p>Over 24 months, 229 discussions were conducted for 198 patients in 43 ENKID MDTs, averaging 15 attendees from 6 centres per meeting. Patients were referred for both clinical complexity and HCD use in 46% (<i>n</i> = 106), solely HCD access in 42% (<i>n</i> = 96) and for clinical complexity alone in 12% (<i>n</i> = 27). Clinical trial eligibility was an additional reason in 9% (<i>n</i> = 20). Diagnoses discussed were ANCA-associated vasculitis (33%, <i>n</i> = 65), membranous nephropathy (18%, <i>n</i> = 35), IgA nephropathy (19%, <i>n</i> = 38), lupus nephritis (15%, <i>n</i> = 29), minimal change disease/focal segmental glomerulosclerosis (7%, <i>n</i> = 14), rarer diseases (5%, <i>n</i> = 10) and diagnostic uncertainty (3%, <i>n</i> = 7). Including rituximab, a HCD was endorsed in 71% and alternative treatment recommended in 29% of referrals for HCD discussions. A wide geographical distribution of referrals was observed and facilitated widespread access to HCDs.</p> Conclusions <p>The ENKID regional MDT addresses the increasing demand for specialist advice for patients with complex and rare kidney diseases. High attendance and case load underscore the need for this service, aligning with the UK government’s mandate for rare autoimmune disease. Integration of this MDT within the EoE NHS England renal network structure, providing governance, education and HCD access, serves as an exemplar for improving GN patient care and accessibility of UK services.</p> Clinical trial number <p>Not applicable.</p>

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The UK Eastern Network for Kidney Inflammatory Disease (ENKID) MDT at 24 months: advancing access to high-cost drugs, clinical trials, and complex case management in renal autoimmune diseases

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  • 发表日期：

    2026年3月28日

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  • Lucy Francis,
  • Olivia Kanka,
  • Ondrej Suchanek,
  • Lisa C. Willcocks,
  • Kevin W. Loudon,
  • Clare Morlidge,
  • Barbara Thompson,
  • David C. Thomas,
  • July Da Silva Araujo,
  • Bernadette Laforteza,
  • Praveen Jeevaratnam,
  • Sapna Trivedi,
  • Frances C. Hall,
  • David R. W. Jayne,
  • Rona M. Smith,
  • Rachel B. Jones

摘要

Background

Glomerulonephritis (GN) accounts for 20%–25% of the causes of chronic and end-stage kidney disease. The evolving treatment landscape with new targeted immunosuppressants has highlighted the unmet need for equity of access to specialist GN services. Regional networks and multidisciplinary team meetings (MDTs) provide access to clinical expertise, high-cost drugs (HCDs) and clinical trials, facilitating collaborative decision-making and optimal use of therapeutics to improve patient outcomes. Launched in May 2023 in the East of England (EoE), the Eastern Network Kidney Inflammatory Disease MDT (ENKID) provides a regional MDT framework designed to improve access to specialist expertise and HCDs- areas identified as lacking for 59% of nephrologists in a 2024 UK GN service survey.

Methods

ENKID is led by the specialist vasculitis, lupus and primary GN service in Cambridge. A database build allows secure standardised data collection including referral indications and treatment decisions during fortnightly virtual regional MDTs.

Results

Over 24 months, 229 discussions were conducted for 198 patients in 43 ENKID MDTs, averaging 15 attendees from 6 centres per meeting. Patients were referred for both clinical complexity and HCD use in 46% (n = 106), solely HCD access in 42% (n = 96) and for clinical complexity alone in 12% (n = 27). Clinical trial eligibility was an additional reason in 9% (n = 20). Diagnoses discussed were ANCA-associated vasculitis (33%, n = 65), membranous nephropathy (18%, n = 35), IgA nephropathy (19%, n = 38), lupus nephritis (15%, n = 29), minimal change disease/focal segmental glomerulosclerosis (7%, n = 14), rarer diseases (5%, n = 10) and diagnostic uncertainty (3%, n = 7). Including rituximab, a HCD was endorsed in 71% and alternative treatment recommended in 29% of referrals for HCD discussions. A wide geographical distribution of referrals was observed and facilitated widespread access to HCDs.

Conclusions

The ENKID regional MDT addresses the increasing demand for specialist advice for patients with complex and rare kidney diseases. High attendance and case load underscore the need for this service, aligning with the UK government’s mandate for rare autoimmune disease. Integration of this MDT within the EoE NHS England renal network structure, providing governance, education and HCD access, serves as an exemplar for improving GN patient care and accessibility of UK services.

Clinical trial number

Not applicable.