Referrals and Contact
How to contact and refer to the National Prion Clinic
Contact us
Address : National Prion Clinic, Institute of Prion Diseases, Courtauld Building, 33 Cleveland Street, London, W1W 7FF
Helpline for National Prion Clinic: 020 7679 5036 /020 7679 5142
Fax: 020 7679 6244
Contact us via email
How to refer a patient
We are happy to receive direct referrals from clinicians via email to uclh.prion.help@nhs.net. Please follow the referral process below.
The UK Referral Process for suspected CJD and other prion diseases
The referral process for suspected CJD patients was updated in August 2025, as outlined in the letter from the UK Chief Medical Officers.
This reflects the re-organisation of CJD surveillance services across the UK, the closure of the National CJD Research and Surveillance Unit (NCJDRSU) at the University of Edinburgh, and the establishment of the National CJD Diagnostic Advisory Service (NCJDAS). The NHS National Prion Clinic (NPC), part of University College London Hospitals NHS Foundation Trust (UCLH), continues to function as previously. CJD is a notifiable disease, so all suspected or confirmed cases should be reported to the relevant UK public health body (see below).
Clinical Referrals
All patients with suspected CJD or other prion diseases should be jointly referred to both the NPC and the NCJDAS, via the following email addresses:
A referral form with required clinical details can be found here.
The NPC and NCJDAS will review the clinical history, investigations and patient imaging, and provide an opinion to the referring team. 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:
| How to report CJD cases for public health and surveillance | Website or contact details | |
| England | All suspected or confirmed cases of CJD should be reported by notification through NOIDS, the Notification of Infectious Diseases. | Link to NOIDS: |
| Northern Ireland | All suspected cases of CJD should be reported to the Health Protection Service in PHA by email (without including patient details), requesting a call back. A member of the health protection team will then contact the clinician to collect information. | Email: PHA.DutyRoom@hscni.net Phone: 0300 555 0119 |
| 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. | Link to contact details of the Health Protection Teams in Scotland: https://publichealthscotland.scot/contact-us/general-enquiries/health-protection-team-contacts/ |
| Wales | Notify the Public Health Wales Health Protection Team of any possible, probable or confirmed cases of CJD via email. | Email: aware@wales.nhs.uk Phone: 0300 00 300 32 |
Cerebrospinal Fluid (CSF) Referrals
Clinicians wishing to refer CSF samples for the RTQuIC 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/NCJDAS, to avoid unnecessary investigations and delays to clinical care.