Home / Surveillance


Magnifying glass looking at charts

National surveillance of CJD in the United Kingdom (UK) was initiated in May 1990 in response to a recommendation in the Southwood Committee Report of the Working Party on Bovine Spongiform Encephalopathy (BSE), to identify any changes in the pattern of CJD that might be attributable to human infection with the agent responsible for the emergence of BSE in cattle. Such a change was recognised in 1996 when ten cases with a clinical and pathological picture distinct from that usually seen in sporadic CJD were described by the Unit - a new variant of CJD.

The NCJDRSU has comprehensive mechanisms in place for the ascertainment of cases of variant and sporadic CJD in the UK. Suspect cases are classified according to internationally recognised published criteria, last updated in January 2017 and applied to all referrals from January 2017.

Referral System

Dialling buttons on a phone keypad

Local clinicians are asked to report all new cases and suspected cases of CJD and other prion diseases to the NCJDRSU in Edinburgh and the National Prion Clinic (NPC) in London

Diagnosis and Testing

Stethoscope lying on top of xrays

The different types of human prion disease are distinguished by the clinical characteristics and investigations, together with a history of a relevant iatrogenic exposure or a family history of a similar disorder.

Data and Reports

Reporting new cases to public health teams

Symbol of sheet of paper in envelope

To help prevent any possible spread of CJD between people, local clinicians should also inform their local health protection/public health team (the Consultant in Public Health Medicine/Communicable Disease Control or equivalent) about all new suspect cases of all types of CJD.