Contact us
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 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 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