Information about Cystinosis national designation centres or “hubs” for patients in England
From September 2022, 3 national “hubs” for the care of patients with cystinosis have been commissioned by NHS England.
It is envisaged that every patient with cystinosis in England is registered with one of the hubs even though in many cases, the vast majority of their clinical care and social services support where appropriate will be delivered locally.
Patients from outside of England can be seen subject to usual commissioning arrangement with devolved nations and other nations as appropriate.
The purpose of the hubs is to support patients with cystinosis, their families and carers, and local clinical services to ensure equity of high quality care provision with access to research and education across the country. For more details see the national specification document.
Patients will be offered at least an annual review in person at the hub. They will have the opportunity to see members of a wide multidisciplinary team as needed for their own circumstances. Where travel is difficult the hub will aim to assist with coordinating local care as much as possible.
The hubs host both paediatric and adult services as per the national specification document.
The three hubs are:
London: Guy’s and St Thomas Hospital for adults and Evelina Children’s.
Birmingham: University Hospitals Birmingham and Birmingham Children’s
Manchester: Manchester Royal Infirmary and Manchester Children’s
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