The National CJD Research & Surveillance Unit

Dear Colleague,

Following the NIHR’s decision not to renew funding, the National CJD Research and Surveillance Unit (NCJDRSU, originally the NCJDSU), founded in 1990, will cease to function on 31.03.25.

There will be continuing support for clinicians and pathologists dealing with suspected cases of CJD and related prion diseases, as detailed below.

  • There will be a continuing national CSF RT-QuIC, funded by the NHS. The test will be provided without cost to the referring hospital and results sent back directly to the relevant clinician. Details of this service can be found at https://cjd.ed.ac.uk/csf.

     

There will be some continuing neuropathology advice and support provided in Edinburgh.

  • There will be a National CJD Diagnostic Advisory Service (NCJDAS) based in the University of Edinburgh. This is primarily to give advice and expert opinion on the clinical diagnosis of CJD and related prion diseases. It will be run by a senior consultant neurologist with an MR image review provision by a senior neuroradiologist -both with extensive experience in prion disease.

     

  • The NHS National Prion Clinic (NPC), UCLH, London continues to offer a full clinical service, including doctor/nurse hospital and domiciliary visits, review of investigations, and follow up advice and care. The NCJDRSU has had close liaison and collaboration with the NPC. The National CJD Diagnostic Advisory Service and NPC will continue this.

     

The long-standing system asked clinicians to refer any suspect cases to the NPC and the NCJDRSU. The new system asks clinicians to refer to both the NCJDAS and NPC. Each unit will ensure that both are aware of notifications and liaise over the most appropriate actions to support and advise clinicians who wish for this.

There is still importance in ensuring accurate data about the number of cases, and types, of CJD in the UK.

 

Professor Richard Knight

University of Edinburgh

12.03.25

The National CJD Diagnostic Advisory Service (NCJDAS)

SERVICE AIMS

This is an NHS-funded service for UK clinicians who wish for advice or support in the diagnosis and classification of suspected cases of CJD/Human prion disease. It is based in the University of Edinburgh and provided by Professor Richard Knight.

The aim is to provide the same sort of advice and support that has been given by the NCJDRSU since 1990.

The NCJDAS will continue the past NCJDRSU’s collaboration/liaison with the NHS National Prion Clinic at UCLH (consultants Professors John Collinge FRS and Simon Mead and Dr Tzehow Mok).

PROCESS

  • Clinicians are encouraged to refer suspected cases of CJD/Human prion disease jointly to the NCJDAS and NPC, using a standard form, via email. The email address is the same as that used by the NCJDRSU: loth.securecjd@hns.scot, the NPC can be accessed at: uclh.prion.help@nhs.net The NCJDAS will respond by email and/or phone at the earliest opportunity and within 2 working days at the latest.

 

  • The NCJDAS and NPC will share details of referred suspected cases and will liaise over the best way to provide support and advice.

 

  • The NCJDSA will review the clinical picture and MR images. It may speak to patients/families if required and consent is given by the local clinician. This is essentially a continuation of part of the NCJDRSU’s past processes. All clinical information will be held in line with standard NHS protocols. This is an NHS service designed to help clinicians dealing with a rare disorder.

Other services

The cerebrospinal fluid (CSF) laboratory

The CSF RT-QuIC test remains available via the same laboratory based in Edinburgh. Clinicians who wish for this test need to contact the laboratory directly. 

Specialist nursing support

There is specialist nursing support available from (1) The NPC and (2) A national specialist nursing service based in NHS Lothian. Details of these will be provided to referring clinicians, as has been done in the past.

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