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National CJD Research and Surveillance Unit, University of Edinburgh

National CJD Research and Surveillance Unit at the University of Edinburgh, founded in 1990. It led the European standardisation of CSF RT-QuIC and ceased to function as a funded research unit on 31 March 2025; a national RT-QuIC laboratory and pathology service continue in Edinburgh.

Key facts

  • Consortium led by Alison Green (NCJDRSU Edinburgh): CSF RT-QuIC workshops and ring trials among 11 international laboratories; RT-QuIC included in European CJD Surveillance Network diagnostic criteria; ECDC-funded ring trial of 13 laboratories.
  • Edinburgh (Green, Pal) with Goettingen (Hermann, Zerr) and others: concordance work for CSF RT-QuIC across European national surveillance laboratories.
  • A patient charity reports the unit, founded in 1990, ceased to function on 31 March 2025 after the NIHR declined to renew funding (secondary source, not an official notice).
  • The same charity reported in March 2026 that funding for the follow-on National CJD Diagnostic Advisory Service in Edinburgh ends on 31 March 2026, with the National Prion Clinic, a nursing service in NHS Lothian, the RT-QuIC laboratory and some pathology continuing.
  • Edinburgh's UK National Reference RT-QuIC Testing Laboratory takes samples Monday to Friday with a required request form and has reported electronically only since July 2025.
  • The university services page published 27 May 2026 lists the RT-QuIC laboratory and a CJD pathology service and routes clinical advice for suspected cases to the National Prion Clinic.
  • A European study of 1,859 patients with CJD and 1,117 controls (with Green and Zerr as authors) found 14-3-3 and tau had 85 and 86 percent sensitivity in sporadic CJD and a combination reached over 93 percent.

Timeline

  1. 1990Unit founded.
  2. 2025Unit ceases to function.
  3. 2025RT-QuIC laboratory moves to electronic-only reporting.
  4. 2026Funding for the diagnostic advisory service ends.
  5. 2026Edinburgh services page published without a research unit.
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