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All cases of suspected CJD should be discussed with the on-call registrar. If the suspicion is supported, then we will assist with further investigation, specialist assessment, and RT-QuIC testing.

If you would like to discuss a patient, please send the following information:

  • Patient Name / Date of Birth / NHS Number
  • Clinical History & Neurological Examination Findings
  • MRI Brain (date of scan and result)
  • Your contact details

By email to: Ace Mcdermott and Richard Knight

To speak to a registrar phone: +44 (0)131 242 9264  

Recommended Actions Prior to Referral

  • Establish clinical history of cognitive decline
  • Establish clinical history of associated neurological symptoms
  • Full neurological examination
  • Investigations
    • Blood tests (FBC, CRP, U&Es, LFTs, TFTs, Bone Profile, B12/Folate, HIV, Syphilis)
    • MRI head
    • CSF cell count, protein, and store sample for possible RT-QuIC testing
  • CSF RT-QuIC sample instructions
    • At least 1mL of clear and colourless CSF, frozen within 2-3 hours of collection
    • A normal -20°C freezer is acceptable for sample storage but a -70°C/-80°C is preferable.

CSF Samples should be sent to

Bioquarter Stores Dept.
FAO Graham Fairfoul / CSF Lab Staff
NCJDRSU, CSF Laboratory Room GU501
Chancellor's Building
The University of Edinburgh Bioquarter Gate 1
49 Little France Crescent
Edinburgh EH16 4SB

Contact Graham Fairfoul / CSF Lab Staff +44 (0)131 465 9558

General Contact Details and Enquiries

NCJDRSU Telephone Information:
Main Office +44 (0)131 537 1980/2128/3103  
Neuropathology Laboratory +44 (0)131 537 3084
CSF Referrals +44 (0)131 537 1980

Email: (please use this email address for sending emails containing patient identifiable information): 

Email: (for general enquiries)

The National Creutzfeldt-Jakob Disease Research & Surveillance Unit
Bryan Matthews Building
Western General Hospital
Crewe Road
Edinburgh EH4 2XU

Donation Information

Donations can be made at

Please contact Kerry Mackay, University Community Fundraiser, for further information on donating and fundraising at


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