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Testing Cerebrospinal Fluid (CSF) Samples for Creutzfeldt-Jakob Disease (CJD)

  1. If CJD is clinically suspected, see www.cjd.ed.ac.uk for further information on clinical features and diagnostic criteria if required.
  2. Clinical team to contact The National CJD Research and Surveillance Unit (NCJDRSU) on 0131 537 3075 to discuss testing of the sample.  Have available the clinical history, EEG and MRI results.

  3. Once approved for testing, inform the laboratory in York (Ext: 5721) or Scarborough (Ext: 2288) . They will help check the following:

    - The CSF needs to be frozen to -70 degrees Celsius as soon as possible

    - The CSF needs to be clear and colourless, red blood cells (RCC) < 150

    - The volume required is 2.0-5.0 mls (the absolute minimum required is 0.5 mls)

  4. If the CSF RCC is 150 - 200, or there is a delay in freezing the sample; the lab will contact the NCJDRSU to discuss whether the sample is still suitable.  If not, the York lab will notify the clinical team.

  5. The NCJDRSU will arrange collection of the sample by courier. Laboratory to contact the NCJDRSU to confirm timings and a point of contact for the courier on arrival at the laboratory.

  6. The NCJDRSU will phone any positive results directly to the clinician within 5-10 working days of receipt of the sample.

    Written copies of the results are also sent to the clinician, and results are available by telephone if required on a Friday >14:00 hours

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