CJD surveillance - Creutzfeldt-Jakob disease surveillance

Last updated on 26-10-2023 by Marinka Vangenck
Project duration:
January 1, 1998
Project with no end date

In short

The Belgian surveillance system for Creutzfeldt-Jakob disease (CJD) was initiated in 1998, following the variant CJD epidemic that mainly affected the UK. The primary goal is to enable the detection of cases of variant CJD in Belgium so precautionary measures can be taken to prevent further spreading. Since all 4 forms of CJD are included in the surveillance, it also allows to detect unusual increases in the number of Belgian CJD cases that could signal the emergence of forms of the disease or ways of transmitting the disease.

Project description


In 1996, variant CJD (vCJD) was first detected in the UK. This form of CJD was soon linked to the consumption of meat of cattle infected with bovine spongiform encephalopathy (BSE), a related disease that had been causing an epidemic in cattle in the UK since 1986. In light of this health crisis, a Belgian surveillance system for the 4 forms of CJD was set up in 1998.

Objective of the surveillance

The first objective is to detect vCJD cases in order to:

  • identify risk factors

  • trace back the source of infection
  • identify possible cases sharing the same exposure
  • prevent secondary transmission through blood products and transplants.

The second objective is to detect increases in the CJD incidence, which could be an early warning signal for the emergence of new prion diseases or for new modes of transmission of known CJD forms.


Seven academic centres of neurology/neuropathology are appointed as CJD reference centres. Sciensano coordinates the surveillance and maintains the surveillance database. Neurologists that suspect a patient has CJD, can refer the patient to a reference centre, which reports probable cases. Three of these centres can confirm cases by autopsy. They report on all autopsies of suspect CJD cases, regardless of the final diagnosis. The surveillance system reimburses these autopsies. Sciensano collects information on personal and demographic characteristics, symptoms, diagnostic procedures and risk factors.

Sciensano regularly analyses the data and communicates its findings in the form of a report.

Sciensano's project investigator(s):

Service(s) working on this project

Associated Health Topics

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