Recommendation ID
NICE recommends the use of eculizumab for atypical haemolytic uraemic syndrome (aHUS) only if all the following arrangements are in place:
- coordination of eculizumab use through an expert centre
- monitoring systems to record the number of people with a diagnosis of atypical
- haemolytic uraemic syndrome and the number who have eculizumab, and the dose and duration of treatment
- a national protocol for starting and stopping eculizumab for clinical reasons
- a research programme with robust methods to evaluate when stopping treatment or dose adjustment might occur.
Any explanatory notes
(if applicable)
These arrangements include, but are not exclusive to, determining: which patient characteristics allow safe treatment withdrawal after an initial response; whether the patient's disease responds to retreatment with eculizumab if it has relapsed after stopping treatment; and whether the drug dose can be titrated to a marker of response, for example, platelet count, as well as data relating to patient experience of the value offered by eculizumab.

Source guidance details

Comes from guidance
Eculizumab for treating atypical haemolytic uraemic syndrome
Date issued
January 2015

Other details

Is this a recommendation for the use of a technology only in the context of research? Yes  
Is it a recommendation that suggests collection of data or the establishment of a register?   No  
Last Reviewed 09/02/2015