About the National aHUS Service

History of the National aHUS Service

  • The National aHUS Service was established in England following the NICE guidance on the use of Eculizumab for aHUS.

  • The full guidance can be read here

https://www.nice.org.uk/guidance/HST1

 

  • The guidance stipulated that the use of Eculizumab should be coordinated through an expert centre.

  • In May 2016, after a 3 year period as the interim centre, Newcastle upon Tyne Hospitals NHS Trust was chosen to run the permanent national centre.

 

About the National aHUS 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

  • In conjunction with the local teams, the consultants at the service will assess all suspected cases of aHUS and whether the use of Eculizumab would be appropriate according to the criteria established by NHS England.

  • In those patients where Eculizumab is used, a shared care agreement then operates between the local team and the National Service.

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

  • We also run 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.

  • This clinic is also available to families of those with aHUS who may also be at risk of the disease.

  • Although the National Service only has control over the use of Eculizumab in England we also provide advice and consultation for patients and their physicians elsewhere.

  • If you do not live in England but would still like some advice and information then please feel free to contact the specialist nurses at the service.

  • We also see patients from other areas from outside England at our specialist clinics. Speak to your local physician if you would like a referral.

 

About the NRCTC

  • The National aHUS 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 Northern Molecular Genetics Service and the complement research group based in the Institute of Cellular Medicine at Newcastle University.

  • Patients with other renal complement mediated diseases can also be seen by consultants at the centre.

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