Atypical Haemolytic Uraemic Syndrome Specialised Services for NHS England

Atypical haemolytic uraemic syndrome (aHUS) is a chronic, rare, progressive condition that causes severe inflammation of blood vessels and the formation of blood clots in small blood vessels throughout the body, a process known as systemic thrombotic microangiopathy. NHS England is seeking bids from provider(s) that can deliver a service for patients with aHUS that meets the specific terms set out in the NICE guidance, namely: • 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; and • a research programme with robust methods to evaluate when stopping treatment or dose adjustment might occur. This is intended to be a 5 year contract (3 years with the option to extend for a further 2 years) The procurement for this service is being carried out as an open process.