The Generative Brain

EUROCJD, Creutzfeldt-Jakob Disease International Surveillance Network

EuroCJD is the European network of national CJD surveillance centres. It started in 1993 with seven countries, grew out of EU funded concerted actions coordinated from the University of Edinburgh, and has been run under the European Centre for Disease Prevention and Control (ECDC) since 2007, with coordination contracted to the National CJD Research and Surveillance Unit in Edinburgh. Its members are the national focal points and operational contact points for transmissible spongiform encephalopathies in EU and EEA countries, with some non-European centres such as Canada and Australia taking part in joint work. The network collects standardised case data, keeps the EU variant CJD surveillance running under EU law, sets shared diagnostic criteria and publishes pooled analyses, including the 2005 analysis of genetic prion disease that the atlas cites for the 10 to 15 percent genetic share. Its current coordination is uncertain: the network site no longer opens and the Edinburgh unit lost its research funding in 2025.

Key facts

  • ECDC says the network was set up in 1993 by seven countries for epidemiological surveillance of CJD, was later enlarged and given a research arm funded by the European Commission research and health directorates, and was transferred to ECDC in 2007 after an evaluation.
  • Earlier EU projects show the Edinburgh lead: a BIOMED1 grant coordinated national registries in France, Italy, Germany, the Netherlands, Slovakia, Spain and the UK, and two follow-on projects from 1997 to 2001, both coordinated by the University of Edinburgh, aimed to extend surveillance to all member states and to compare with Switzerland, Canada and Australia.
  • Members are TSE experts nominated by national competent bodies as National Focal Points and Operational Contact Points; a 10 member elected coordination committee advises ECDC.
  • ECDC funds the coordination and outsources it to the National CJD Research and Surveillance Unit in Edinburgh, according to its network page last updated in August 2025.
  • EU variant CJD surveillance became mandatory in 2000 under Decision 2000/96/EC; the current legal basis is Decision 1082/2013/EU on serious cross-border health threats, and vCJD cases including historical ones have been reported to the TESSy database since 2012.
  • ECDC counts 29 collaborating centres in EU and EEA/EFTA countries; a search excerpt of the 2013 meeting report gives 25 plus eight countries outside Europe, and one of the network site gives 28 plus 9.
  • The 2005 EUROCJD analysis of genetic prion disease used standardised data from 1993 to 2002, was led from the Austrian reference centre in Vienna with ISS Rome, Goettingen, Edinburgh, Canadian, Australian and Spanish co-authors, and found genetic forms make up 10 to 15 percent of cases with mutation frequencies that differ by country.
  • Pooled network papers cover diagnosis across eleven countries from 1993 to 2002 and occupational risk across 21 countries with 8,321 sporadic CJD cases, both led from the Spanish national epidemiology centre.
  • CSF RT-QuIC is part of the revised network diagnostic criteria; an ECDC funded ring trial in 2022 found excellent agreement across 13 laboratories in 11 countries.
  • Researchers outside the network use its criteria and data as a reference, for example French national surveillance classifying cases by EuroCJD criteria and a Japanese study comparing disease duration with EUROCJD patients.
  • The ISS Rome national registry lists the network, hosted at the University of Edinburgh, among its external links.

Timeline

  1. 1993Network set up by seven countries.
  2. 1997EU INCO project on CJD incidence and risk factors starts, coordinated by the University of Edinburgh (to 2000-04).
  3. 1998BIOMED 2 concerted action to coordinate national CJD surveillance across the EU starts (to 2001-09).
  4. 2000EU variant CJD surveillance made mandatory under Decision 2000/96/EC.
  5. 2005Genetic prion disease paper of the EUROCJD collective published in Hum Genet.
  6. 2006Eleven country diagnostic pattern paper published.
  7. 2007Responsibility for the network passes to ECDC.
  8. 2008EuroCJD and NeuroCJD reported merged into one ECDC network (search excerpt only).
  9. 2012vCJD reporting, including historical cases, moves into TESSy.
  10. 2012Health professions and sporadic CJD risk paper with 21 countries published.
  11. 2013Network meeting in Oslo agrees continued vCJD notification and early warning.
  12. 2013Decision 1082/2013/EU enters into force as the legal basis.
  13. 2015Biennial expert meeting in Budapest.
  14. 2021Network site reportedly says ECDC project funding ended (search excerpt only).
  15. 2022CSF RT-QuIC concordance study across the network published.
  16. 2025ECDC network page last updated, still naming the Edinburgh contractor.
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