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Referrals

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:  loth.securecjd@nhslothian.scot.nhs.uk (please use this email address for sending emails containing patient identifiable information): 

Email:  contact.cjd@ed.ac.uk (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 https://donate.ed.ac.uk/support/cjd-donations

Please contact Kerry Mackay, University Community Fundraiser, for further information on donating and fundraising at Kerry.Mackay@ed.ac.uk

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