About the Specialist Service for C3 Glomerulopathy at the NRCTC

History of the Service

  • The National Renal Complement Therapeutics Centre was established in Newcastle upon Tyne in 2016

  • One of its main roles is as the National aHUS Service, to oversee the use of Eculizumab for patients with Atypical Haemolytic Uraemic Syndrome in England

  • The scope of the NRCTC grew in February 2017, when NHS England announced that it would fund the use of Eculizumab for treatment of recurrence of C3G in a kidney transplant.

  • The full details of this new policy can be read here

https://www.england.nhs.uk/wp-content/uploads/2017/02/clin-comms-policy-16054p.pdf.

  • The team in Newcastle have been asked to act as the expert centre for this policy alongside their role as the National aHUS Service.

  • The role of the NRCTC in delivering the C3G policy for use of Eculizumab is being implemented in partnership with colleagues at Imperial College Healthcare NHS Trust.

 

About the C3G Service

  • The service is based at the Royal Victoria Infirmary, in the heart of Newcastle city centre.

  • The team comprises

    • Adult and paediatric consultant nephrologists with a particular interest in renal complement diseases

    • Specialist nurses

    • Service manager 

    • Medical secretaries

  • In addition, we have specialist input from consultants in genetics and immunology, biomedical scientists and researchers in genetics, immunology and pathology.

 

How the service works

  • The team at the NRCTC gives advice on the management of this rare condition to local kidney specialists around the country.

  • We have a clinic in Newcastle where patients can be seen by one of the consultants who run the service. Skype and telephone consultations are also available.

  • Speak to your local physician if you would like a referral.

Eculizumab for treatment of recurrent C3G in the kidney transplant

  • In February 2017, NHS England announced that it would fund the use of Eculizumab for treatment of recurrence of C3G in a kidney transplant in England.

  • In conjunction with the local teams, a team of experts from the NRCTC and Imperial College Healthcare NHS Trust will assess cases of recurrence of C3G in a transplanted kidney. They decide whether a patient is suitable for funding for Eculizumab, based on criteria set by NHS England.

  • In those patients where Eculizumab can be funded, a shared care agreement then operates between the local team and the service.

  • The shared care agreement allows the service to collect data on treatment and outcomes that we are required to provide to NHS England.

 

About the NRCTC 

  • The C3G Service is part of the National Renal Complement Therapeutics Centre in Newcastle upon Tyne, a partnership between the Newcastle upon Tyne Hospitals NHS Trust, the Institute of Genetics at the Centre for Life in Newcastle and the complement research group at Newcastle University.

  • This partnership ensures that patients with renal complement mediated diseases can be sure that they have access to the latest research and developments in this area.