Treatment Centres

Specialist Hubs

From September 2022, three 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.

UK based 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. The hubs host both paediatric and adult services.

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.

• London – Guy’s and St Thomas’ Hospital and Evelina London Children’s Hospital
• Birmingham – University Hospitals Birmingham and Birmingham Children’s
• Manchester – Manchester Royal Infirmary  and Manchester Children’s

Diagnosis

Young patients with the genetic disorder that causes cystinosis are likely to be diagnosed by a consultant paediatric nephrologist. These consultants practice in many hospitals around the UK but are organised through 13 regional centres, as listed below.

• Belfast Children’s Hospital
• Birmingham Children’s Hospital
• Bristol Royal Hospital for Children
• Noah’s Ark Children’s Hospital (Cardiff)
• Royal Hospital for Children Glasgow
• Leeds Children’s Hospital
• Alder Hey Children’s Hospital (Liverpool)
• Evelina London Children’s Hospital
• Great Ormond Street Hospital (London)
• Royal Manchester Children’s Hospital
• Great North Children’s Hospital (Newcastle)
• Nottingham Children’s Hospital
• Southampton Children’s Hospital

Blood Testing

Measurement and control of the cystine levels in patients, through the administration of Cystagon, is key to their health and blood samples are taken regularly to monitor the level. These have to be analysed at one of the 5 laboratories that are certified to do this, namely Birmingham, Great Ormond Street, Leeds, Manchester Hospital and Guy’s & St Thomas’/ Evelina London Children’s.