Following the NIHR’s decision not to renew funding, the National CJD Research and Surveillance Unit (NCJDRSU), founded in 1990, ceased to function on 31.03.25.
However, there will be continuing support for clinicians and pathologists dealing with suspected cases of CJD and related prion diseases:
- There will be a continuing national CSF RT-QuIC Laboratory, funded by the NHS. The test will be provided without cost to the referring hospital and results sent back directly to the relevant clinician.
- There will be a National CJD Diagnostic Advisory Service (NCJDDAS) based in the University of Edinburgh. This will be run by Professor Richard Knight.
- The NHS National Prion Clinic (NPC), UCLH, London will continue 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 NCJDDAS and NPC will continue this.
- There will be some continuing neuropathology advice and support provided in Edinburgh.
Clinicians will be asked to refer suspected cases to both the NCJDDAS 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.
Specialist nursing services will continue via the NPC and the national nursing service based in NHS Lothian.
There is still importance in ensuring accurate data about the number of cases, and types, of CJD in the UK. The systems for ensuring this are under discussion with various bodies in the UK regions.
Additional information (added 11th April 2025): As outlined above, there have been significant changes due to reduced funding at the NCJDRSU, leading to it’s closure, the discontinuation of dedicated CJD research projects and cessation of in-person clinical assessments. Funding for the MRC Prion Unit at UCL and National Prion Clinic has also been reduced.
Diagnostic and clinical advisory support for patients, families, and clinicians will however continue through the National CJD Diagnosis and Advice Service (NCJDDAS) and the National Prion Clinic (NPC). Please be reassured that the spinal fluid RT-QuIC laboratory diagnostic test remains available to clinicians throughout the UK.
Research into prion diseases remains active through the NPC, the MRC Prion Unit, and other independently funded research projects. However, we anticipate further possible changes over coming years, depending on funding developments meaning it is a challenging time for work in this field.
The CJDSN remains committed to promoting CJD awareness, enhancing diagnosis, providing patient care, and supporting ongoing research, including funding projects directly when resources permit. We greatly appreciate your understanding during these uncertain times and remain available to assist with questions or concerns – [email protected]
