The following forms are for use following discussion of a case of suspected aHUS with the on-call consultant at the National aHUS Service.
Diagnostic Checklist (Referral Form)
STEC Testing – (England) / (Scotland)
aHUS Lab Diagnostics: Following discussion we will recommend sending blood samples to our labs. We will confirm the appropriate form at time of discussion.
Shared Care Protocol – required for Blueteq approval in cases where use of eculizumab is approved
If you have a patient with recurrent C3G following transplantation – please contact the on-call consultant and complete the C3G checklist.
For patients on eculizumab or ravulizumab, follow up bloods for monitoring complement haemolytic activity can be requested
Form for patients on eculizumab/ravulizumab
Further advice can be found below once eculizumab has been recommended for your patient or if your patient is planning to switch to ravulizumab
Download diagnostic checklist here
A renal TMA can be the presenting feature in a number of other diseases and these should be excluded before a firm diagnosis of aHUS can be made. Many tests in the diagnostic checklist can be performed at the referring centre.
Please use the forms in this section for complement profile testing / ADAMTS13 measurement and STEC testing as soon as aHUS is suspected and PRIOR to plasma exchange.
See above for links to forms.
We have established a combined aHUS lab diagnostics service in Newcastle upon Tyne Hospitals that encompasses a comprehensive genetic and immunological evaluation of the complement system (that includes ADAMTS13 activity) to facilitate diagnosis of aHUS and exclusion of TTP.
Full instructions for sampling and transporting to the combined aHUS lab diagnostic services at in Newcastle upon Tyne Hospitals are on the request form. This service is fully funded for patients in England and Scotland as part of the diagnostic pathways in patients referred to the national aHUS service for consideration of Eculizumab or Ravulizumab.
Requests using these forms should be made following discussion with a consultant at the NRCTC.
In certain situations, it may be more appropriate to use our Genetics and FHAA form [eg if the patient has recently received plasma products or if patient has kidney failure and is being screened for complement abnormalities to inform management at time of transplantation. If in doubt, please discuss with the on-call consultant.
Shared Care Protocol
Download shared care protocol here
Responsibility for the care of patients in England receiving Eculizumab / Ravulizumab is shared between the National aHUS service and the referring consultant. The responsibilities of each are outlined in the shared care protocol. All clinicians must agree to the shared care protocol before eculizumab can be authorised by NHS England.
STEC testing
Download forms for STEC testing here – (England) / (Scotland)
Testing for STEC-HUS can be performed by The UK Health Security Agency Gastrointestinal bacteria reference unit (GBRU) Colindale. For patients in England, this can now be requested via the NRCTC using the form above. Simply follow the sampling instructions and send to Colindale. STEC testing is funded for patients in England and paid for by NHS England as part of the diagnostic and follow-up pathways in patients referred to the National aHUS service for consideration of Eculizumab or Ravulizumab. Similar testing where indicated should be considered for all patients where haemolytic uraemic syndrome is suspected. Screening of household members may also be indicated. For patients in Scotland, samples should be sent to the Scottish E.coli O157 / STEC Reference Laboratory Edinburgh.
In addition, it is appropriate to notify the local health protection team cases of suspected STEC – a diagnosis of HUS without positive microbiological confirmation is sufficient to warrant notification. To notify – in England – Find your local health protection team in England – GOV.UK (www.gov.uk)
