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European Centre for Disease Prevention and Control (ECDC), Stockholm

ECDC is the EU agency for infectious disease threats, operating since 2005 from Stockholm with about 300 staff. For prion disease it plays four roles. It has been responsible for the European CJD surveillance network (EuroCJD) since 2007 and funds its coordination, which it contracts to the Edinburgh national CJD unit. It collects variant CJD case data in its TESSy database and publishes annual vCJD reports. It writes risk assessments, such as the 2021 assessment of vCJD risk from UK plasma products. And it has paid for training and quality work on the CSF RT-QuIC test, including Edinburgh workshops in 2014 and 2015, a laboratory protocol in 2021 and a 13 laboratory ring trial. Its EU level case reporting covers vCJD only, not the sporadic or genetic forms.

Key facts

  • ECDC has run since 2005, is based in Stockholm, has about 300 staff and works to identify, assess and communicate threats to human health from infectious diseases.
  • Pamela Rendi-Wagner became ECDC Director on 17 June 2024, according to the ECDC biography; the About page fetched on 2026-10-16 still named her predecessor.
  • ECDC took over responsibility for the EuroCJD network in 2007, funds its coordination and outsources it to the Edinburgh National CJD Research and Surveillance Unit; a network coordination committee advises ECDC.
  • vCJD surveillance has been mandatory in the EU since 2000, and since 2012 vCJD cases, including historical ones, are reported to ECDC's TESSy database under the 2012 EU case definition, counting only probable and confirmed cases.
  • ECDC's annual reports recorded one probable vCJD case in the EU/EEA in 2021 (France, linked to a probable laboratory exposure) and none in 2022, with 28 countries reporting for 2022.
  • The 2021 report says the EU vCJD epidemic peaked in 1999 to 2004 and mortality is now below 0.01 per million, while Germany and Finland reported no vCJD data in 2017 to 2021 and the UK none for 2020 and 2021.
  • In August 2021 ECDC assessed the vCJD risk from UK sourced blood and plasma products after the UK lifted its plasma ban; it found the residual risk could not be judged with confidence without a blood test and suggested countries could, as a precaution, avoid UK plasma derived products until product data were available.
  • ECDC funded and co-organised RT-QuIC training at the Edinburgh unit in March 2014 and April 2015; the 2015 workshop drew 14 people from 8 countries and was paid for as part of ECDC's support to EuroCJD.
  • In February 2021 ECDC published a laboratory SOP for CSF RT-QuIC in sporadic CJD, written at the Edinburgh unit and based on the Caughey Group methods.
  • ECDC funded the 13 laboratory, 11 country CSF RT-QuIC concordance study published in 2022, which found high agreement and recommended the test for all CJD surveillance centres.
  • ECDC organised the EuroCJD network meetings in Oslo in June 2013 and Budapest in September 2015.
  • In May 2023 ECDC supported a Belgium and Tunisia expert exchange on setting up CJD surveillance and a national reference laboratory, the first under its Exchange of Experts programme for neighbourhood countries.
  • The 2021 report states that TESSy collects only vCJD and that national and EU surveillance of all forms of CJD remains important.
  • The Italian national CJD registry lists ECDC among its external links.

Timeline

  1. 2000vCJD surveillance made mandatory in the EU.
  2. 2005ECDC becomes operational in Stockholm.
  3. 2007Responsibility for EuroCJD passes to ECDC.
  4. 2012vCJD reporting, including historical cases, moves into TESSy.
  5. 2013EuroCJD network meeting in Oslo.
  6. 2014ECDC organised CSF RT-QuIC workshops in Edinburgh.
  7. 2015ECDC funded RT-QuIC diagnostic workshop in Edinburgh.
  8. 2015EuroCJD expert meeting in Budapest organised by ECDC.
  9. 2019ECDC funded 13 laboratory RT-QuIC ring trial set up.
  10. 2021Laboratory SOP for RT-QuIC published.
  11. 2021Risk assessment on vCJD and UK plasma products.
  12. 2022Concordance study across the network published with ECDC funding.
  13. 2023Belgium and Tunisia CJD expert exchange.
  14. 2024vCJD annual report for 2021 posted.
  15. 2024Pamela Rendi-Wagner takes office as Director.
  16. 2024vCJD annual report for 2022 posted, no cases.
  17. 2025EuroCJD network page last updated, still naming the Edinburgh contractor.
Sources for this page