The Glomerulonephritis Special Interest Group (SIG) brings together healthcare professionals with an interest in improving care for people with glomerular disease. It aims to strengthen the quality, consistency and coordination of care across the UK, from diagnosis and treatment through to long-term management.
Care can vary between kidney centres, including access to specialist expertise, diagnostic tests and newer treatments. The SIG brings the kidney community together to understand this variation, share expertise and develop practical approaches to improving services and patient outcomes.
The SIG is working with the UK Renal Registry to develop a national registry for people with glomerulonephritis. The registry will extend national data collection to include people with GN who fall outside the UKRR’s current scope. Its primary purpose will be to support national audit and service improvement, helping the kidney community understand how care and access to treatments vary across the UK.
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The SIG’s responsibilities include:
Workstream leads: Silke Brix and Megan Griffith
This workstream is supporting the development of the proposed GN Registry, including the definition of core data fields, improvements to diagnostic coding and alignment with existing UK Renal Registry and RaDaR data where appropriate.
It also uses national surveys to understand variation in care and identify priorities for audit, quality improvement and research. Current activity includes work to map practice in anti-GBM disease.
Workstream leads: Louise Oni and David Kavanagh
This workstream is examining how children and young people with glomerular disease move into adult services. It is working with the Transition to Young Adult SIG to map current pathways and understand where specialist treatments, biopsies and clinical expertise are available.
The work will inform a UK pathway intended to support appropriate transition based on clinical need and access to expertise, rather than geography alone.
Workstream leads: Megan Griffith and Hayley Wells
This workstream reviews existing GN education, identifies gaps and develops learning for healthcare professionals involved in GN care.
Its first clinical education module is being developed from work on the advanced renal pharmacist curriculum, with plans to adapt it for doctors, pharmacists and nurses. Approved resources will be made available through the UKKA Education Hub where appropriate.
Workstream leads: Silke Brix and David Kavanagh
This workstream is mapping the services, diagnostic capabilities and specialist expertise available across the UK. It aims to identify gaps and support clearer expectations for the provision of GN care.
Current activity includes examining anti-GBM services and access to specialist tests, treatments and nursing and pharmacy support.
Workstream leads: Hayley Wells and Clare Morlidge
This workstream examines variation in access to and use of specialist and newly approved treatments for glomerular disease.
It uses prescribing data and national surveys to understand differences between centres and identify practical barriers to treatment. Current projects include a survey of obinutuzumab use and analysis of variation in the prescribing of sparsentan and budesonide.
The workstream also supports the sharing of prescribing protocols, patient information and practical experience of introducing new treatments.