Contact us

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 have the following information at hand if possible:

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

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

By email to:  aino-minerva.kortelainen@nhs.scot   or   loth.securecjd@nhs.scot

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 StaffNCJDRSU, CSF Laboratory Room GU501Chancellor's BuildingThe University of Edinburgh Bioquarter Gate 149 Little France CrescentEdinburgh 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 3084CSF 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 UnitBryan Matthews BuildingWestern General HospitalCrewe RoadEdinburgh 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