The European Creutzfeldt Jakob Disease Surveillance Network

The EUROCJD network was established in 1993 by seven countries to conduct epidemiological surveillance for Creutzfeldt Jakob disease.  There are now 25 collaborating centres from EU Member States and EFTA countries, and also eight additional countries worldwide, who provide data from national registries.   The project is co-ordinated from the National CJD Surveillance Unit based in Edinburgh and is funded by the European Centre for Disease Prevention and Control (ECDC).

To identify all cases of variant CJD in the Europe Union.

To provide accurate data on the worldwide incidence of variant CJD through collaborations with other non-EU countries.

To examine risk factors for the development of variant CJD, including history of past residence in the UK.

To identify and characterise cases of vCJD caused by secondary transmission through blood transfusion.

To identify any further routes of secondary transmission of variant CJD, for example through contaminated surgical instruments, plasma derived medicinal products, from mother to child or though dentistry.

To provide advice on diagnosis to all participating countries, including review of clinical data and specialist investigations and examination of tissue samples.

To act as a reference centre for variant CJD in the EU.

To disseminate information on variant CJD through a website and scientific publications.

To provide an early warning system to ECDC.

To identify novel forms of human prion disease, including cases potentially linked to atypical animal prion diseases and cases associated with variation in genetic background.

Collection, with appropriate consent, of tissues for use in scientific research.