Our National Prion Clinic (NPC)'s multidisciplinary team comprises consultant neurologists, clinical research fellows and clinical nurse specialists. We offer comprehensive assessment, diagnostic services and investigation for all forms of the disease including neuropsychology, neurophysiology, imaging, genetic testing, and tissue diagnosis. We are a mobile service that will visit patients throughout the UK at short notice, providing clinical expertise for a rare neurodegenerative disease.
We provide diagnosis and care for all forms of prion disease:
- Inherited/familial prion disease
- Iatrogenic prion disease
- Sporadic CJD
- Variant CJD
We accept referrals for all undiagnosed neurological conditions if there is a suspicion of prion disease.
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 within a week.
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 their outpatient appointments, visit them at home, and attend case conferences as necessary.
All patients also have access to the support and advocacy service and can been seen by the clinical staff as an outpatient or in their own home.
We act as a support service to your local GP or hospital consultant. At their discretion we normally see patients and their families for the duration of the illness.