The National Diagnostic Advisory Service (NCJDAS) in the University of Edinburgh will cease operating on 31/3/26.
From 1980 to 1984, the MRC had funded a CJD surveillance/research project based in Oxford. This covered England and Wales and collected data on cases of CJD over the 15 year period of 1970-1984. Following concerns about BSE, the National CJD Surveillance Unit, later renamed the National CJD Research & Surveillance Unit, was established in 1990, based in the University of Edinburgh, covering all the UK. These projects provided accurate information on the frequency and clinical characteristics of CJD, helped to develop criteria for clinical diagnosis, and assessed
modern diagnostic tests based on MR scans and spinal fluid examination. In 1996, variant CJD was recognised and linked causally to BSE contamination of human diet.
The CJD Unit also provided information and support for patients and families, establishing a specialist nursing team and always working closely with the CJD Support Network.
In addition, the Unit was involved in the establishment, running, and chairing of an international CJD collaboration that contributed greatly to the understanding of CJD. Funding for the NCJDRSU ceased on 31.03.25. Following this, there was a National CJD Diagnostic Advisory Service, based in Edinburgh, that had the much more restricted remit of giving diagnostic advice to clinicians concerned about possible cases of CJD. Funding for this service ceases on 31.03.26.
This marks the end of an important era of CJD surveillance, research and support in the UK.
Continuing CJD Services in the UK
- The National Prion Clinic in London continues its work and provides information, clinical expertise, support and specialist nursing care.
- There is also a continuing specialist nursing service based in Lothian NHS, Edinburgh.
- The CSF (spinal fluid) RT-QuIC Testing Laboratory, based in Edinburgh, continues to provide national diagnostic testing for NHS clinical services.
- There are continuing provisions for some pathological diagnostic services in London, Edinburgh and a few other centres.
