CJD SERVICES BASED IN THE UNIVERSITY OF EDINBURGH
Dear Colleague,
The National CJD & Research Surveillance Unit (NCJDRSU), founded in 1990, ceased to function on 31.03.25.
There was a clinical National Diagnostic Advisory Service (NCJDAS) provided from 01.04.25, but this will cease on 31.03.26.
During the time of both the NCJDRSU and the NCJDAS, clinicians were asked (by the CMOs) to refer suspect cases of CJD to both the NCJDRSU/NCJDAS (in Edinburgh) and the NPC (National Prion Clinic, London). The two services liaised over referrals and, together, provided advice and support to clinicians.
Following the closure of the NCJDAS, on 31.03.26, clinicians are asked to continue to refer suspect CJD cases to the NPC alone. The NPC contact address for referrals remains:
uclh.prion.help@nhs.net
The CSF RT-QuIC laboratory remains in service, with contact details as before, and given below.
A specialist nursing service remains, with details as below.
Over the period 01.03.26-31.03.26, the NCJDAS will provide advice and support where possible, but responses may be limited as time is dedicated to winding up the service in preparation for closure on 31.03.26.
Professor Richard Knight
University of Edinburgh
01.03.26
Continuing 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.
This article was published on