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.
Patients coming to London for an outpatient appointment will be seen at the National Hospital for Neurology and Neurosurgery at Cleveland Street.
Patient contact
Service management
Sakib Kasem
Address
National Prion Clinic (NPC)
National Hospital for Neurology and Neurosurgery
Box 98
Queen Square
London, WC1N 3BG
Other referral information
All patients with suspected CJD or other prion diseases should be referred to the NPC. We are happy to receive direct referrals from clinicians via email. Please complete the referral form with required clinical details, which can be found here and send to uclh.prion.help@nhs.net.
The NPC will review the clinical history, investigations and patient imaging, and provide an opinion to the referring team following MDT review. If appropriate, this will be followed by an in-person or remote assessment by clinicians from the NPC. The responsibility for care and investigation of individual patients remains with the consultant responsible for that patient, in consultation with the general practitioner.
CJD is a notifiable disease
Please note that CJD is now a notifiable disease – it is the responsibility of the referring team to also report any suspected or confirmed cases of CJD to the relevant UK public health body, as outlined below:
- England - All suspected or confirmed cases of CJD should be reported by notification through NOIDS, the Notification of Infectious Diseases.
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Northern Ireland - All suspected cases of CJD should be reported to the Health Protection Service in PHA by email at PHA.DutyRoom@hscni.net (without including patient details), or on 0300 555 0119, requesting a call back. A member of the health protection team will then contact the clinician to collect information.
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Scotland - All confirmed, probable and possible cases of CJD should be reported to the local NHS board Health Protection Team (HPT) in their Public Health Department requesting a call back. A member of the HPT will then contact the clinician to collect information. Confirmed, probable and possible cases will be reported to Public Health Scotland (PHS) by the relevant Health Protection Team and the NCJDAS.
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Wales - Notify the Public Health Wales Health Protection Team of any possible, probable or confirmed cases of CJD via email at aware@wales.nhs.uk or call 0300 003 0032
Cerebrospinal Fluid (CSF) referrals
Clinicians wishing to refer CSF samples for the RT-QuIC assay should follow instructions in this link.
The CSF laboratory at the Centre for Clinical Brain Sciences, University of Edinburgh, is not a clinical advice service. We strongly encourage any clinicians wishing to refer a sample for this test to also discuss the case with the NPC to avoid unnecessary investigations and delays to clinical care.
Referral address
National Prion Clinic (NPC)
National Hospital for Neurology and Neurosurgery
Box 98
Queen Square
London, WC1N 3BG
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 on 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.
Consultants
