A national survey of autoimmune glomerular disease services in the UK.
5 affiliations
- 1Department of Medicine, University of Cambridge, Cambridge, UK. [email protected].
- 2Department of Nephrology, Addenbrooke's Hospital, Addenbrooke's Vasculitis and Lupus Department, Cambridge University Hospitals NHS Trust, Hills Road, Cambridge, CB2 0QQ, UK. [email protected].
- 3John Walls Renal Unit, University Hospitals of Leicester NHS Trust, Leicester, UK.
- 4Department of Nephrology, Addenbrooke's Hospital, Addenbrooke's Vasculitis and Lupus Department, Cambridge University Hospitals NHS Trust, Hills Road, Cambridge, CB2 0QQ, UK.
- 5Department of Medicine, University of Cambridge, Cambridge, UK.
Abstract
Background
Glomerulonephritis (GN) accounts for 20%-25% of chronic kidney disease and is a major cause of end-stage kidney disease. The 2021 UK Rare Disease Framework highlighted inequities in rare disease care, with commitments to integrated care and equitable access. This national survey explored unmet needs in GN services, particularly service delivery, access to novel therapies, and research opportunities.Methods
An online survey was designed by the UK Kidney Research Consortium Glomerulonephritis Clinical Study Group and distributed to UK adult and paediatric nephrologists. The 25-item survey assessed service infrastructure and staffing, equity of access to novel therapies, and research infrastructure and barriers. Responses were analysed using descriptive statistics and qualitative content analysis.Results
Eighty-five responses were received from all eight NHS England renal networks and from Northern Ireland, Scotland, and Wales, including 73 adult respondents from 57 renal centres and 12 paediatric nephrologists from 10 paediatric centres. After removing duplicate responses per centre, 67% (38/57) of adult respondents from 57 centres reported working in a tertiary renal centre. Overall, 67% (38/57) reported a dedicated primary glomerulonephritis, vasculitis or lupus clinic, 49% (28/57) cohorted patients by disease subtype, and 32% (18/57) ran more than one clinic per week. Most reported access to day-case infusion services 93% (53/57), plasma exchange 77% (44/57), and in-house multidisciplinary teams 74% (42/57). There was a reported absence of a specialist clinic in 33% (19/57) of centres, in-house glomerular disease specialist consultant support 30% (17/57), specialist nurses 61% (35/57), and renal research nurses 18% (10/57). Regional multidisciplinary meetings and dedicated patient messaging systems were unavailable for 58% (33/57) and 60% (34/57) respectively. In England, access to rituximab, avacopan, belimumab and voclosporin was variable. Research activity was reported by 72% (41/57) for commercial and 56% (32/57) for non-commercial studies. Most respondents 96% (55/57) expressed a desire to increase research involvement, and 81% (46/57) wished to lead their own studies. Reported barriers in embedding research into clinical practice included lack of clinician time, insufficient job-plan allocation, limited research nurse availability and funding. Paediatric respondents also reported similar constraints.Conclusions
This survey highlights disparity in access to specialist clinics, specialist nurse support and regional MDTs in glomerular disease across the UK. Nephrologists remain highly motivated to conduct research, though capacity and funding constraints persist.Clinical trial number
Not applicable.
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BibTeX
@article{francis2026national,
title = {{A national survey of autoimmune glomerular disease services in the UK.}},
author = {Lucy Francis and Jonathan Barratt and Jane Hollis and Lisa Willcocks and Rachel B Jones},
journal = {BMC nephrology},
year = {2026},
month = aug,
doi = {10.1186/s12882-026-05257-6},
url = {https://europepmc.org/article/MED/42972294},
note = {CC BY},
}
RIS
TY - JOUR
TI - A national survey of autoimmune glomerular disease services in the UK.
AU - Lucy Francis
AU - Jonathan Barratt
AU - Jane Hollis
AU - Lisa Willcocks
AU - Rachel B Jones
PY - 2026
DA - 2026/08/05
JO - BMC nephrology
DO - 10.1186/s12882-026-05257-6
UR - https://europepmc.org/article/MED/42972294
AB - Background Glomerulonephritis (GN) accounts for 20%-25% of chronic kidney disease and is a major cause of end-stage kidney disease. The 2021 UK Rare Disease Framework highlighted inequities in rare disease care, with commitments to integrated care and equitable access. This national survey explored unmet needs in GN services, particularly service delivery, access to novel therapies, and research opportunities.Methods An online survey was designed by the UK Kidney Research Consortium Glomerulonephritis Clinical Study Group and distributed to UK adult and paediatric nephrologists. The 25-item survey assessed service infrastructure and staffing, equity of access to novel therapies, and research infrastructure and barriers. Responses were analysed using descriptive statistics and qualitative content analysis.Results Eighty-five responses were received from all eight NHS England renal networks and from Northern Ireland, Scotland, and Wales, including 73 adult respondents from 57 renal centres and 12 paediatric nephrologists from 10 paediatric centres. After removing duplicate responses per centre, 67% (38/57) of adult respondents from 57 centres reported working in a tertiary renal centre. Overall, 67% (38/57) reported a dedicated primary glomerulonephritis, vasculitis or lupus clinic, 49% (28/57) cohorted patients by disease subtype, and 32% (18/57) ran more than one clinic per week. Most reported access to day-case infusion services 93% (53/57), plasma exchange 77% (44/57), and in-house multidisciplinary teams 74% (42/57). There was a reported absence of a specialist clinic in 33% (19/57) of centres, in-house glomerular disease specialist consultant support 30% (17/57), specialist nurses 61% (35/57), and renal research nurses 18% (10/57). Regional multidisciplinary meetings and dedicated patient messaging systems were unavailable for 58% (33/57) and 60% (34/57) respectively. In England, access to rituximab, avacopan, belimumab and voclosporin was variable. Research activity was reported by 72% (41/57) for commercial and 56% (32/57) for non-commercial studies. Most respondents 96% (55/57) expressed a desire to increase research involvement, and 81% (46/57) wished to lead their own studies. Reported barriers in embedding research into clinical practice included lack of clinician time, insufficient job-plan allocation, limited research nurse availability and funding. Paediatric respondents also reported similar constraints.Conclusions This survey highlights disparity in access to specialist clinics, specialist nurse support and regional MDTs in glomerular disease across the UK. Nephrologists remain highly motivated to conduct research, though capacity and funding constraints persist.Clinical trial number Not applicable.
SN - 1471-2369
ER -