The National Prion Clinic performs comprehensive investigations and assessment to provide diagnosis and care for all forms of suspected prion disease: Inherited/Familial, Iatrogenic, Sporadic and Variant. We routinely perform the following tests and investigations: genetic testing (diagnostic and predictive), imaging, neurophysiology, neuropsychology, tissue diagnosis and tonsil biopsy (as a means of diagnosing vCJD).
The clinic receives approximately 12 new referrals a month. Families and local teams are contacted the day the referral is made and we aim to review new patients throughout the UK within a week. We are a mobile service and act as support for local health services. Our support services include information on prion disease presentation and progression, symptom management, family information days and training workshops. At their discretion we normally see patients and their families for the duration of the illness.
Each patient is allocated a named nurse who will manage their care for the duration of their involvement in the clinic. Their nurse will be available via telephone or email, be present at outpatient appointments, carry out home visits, and attend case conferences as necessary. The nurses at the prion clinic are also available to provide emotional and practical support for patients and their families.
www.uclh.nhs.uk/prion provides further information on our NHS services.