How should I approach the referral of a patient with suspected CJD to a specialist service?

Guideline-aligned answer with reasoning, red flags and references. Clinically reviewed by Dr Kola Tytler MBBS CertHE MBA MRCGP.

Posted: 22 August 2025Updated: 22 August 2025 Guideline-Aligned (High Confidence) Clinically Reviewed
Dr Kola Tytler MBBS CertHE MBA MRCGPClinical Lead • iatroX

Approach to referral for suspected Creutzfeldt-Jakob disease (CJD):

  • Refer the patient promptly to a neurological specialist service that has access to appropriate diagnostic tests, including cerebrospinal fluid examination, to confirm CJD or similar rapidly-progressive dementias.
  • Ensure that reversible causes of cognitive decline have been investigated and ruled out before referral.
  • In the referral letter, specify the suspicion of rapidly-progressive dementia and the possibility of CJD to facilitate urgent and appropriate specialist assessment.
  • Specialist services will use international criteria for diagnosing CJD and may perform structural imaging and other investigations to assist diagnosis.

This approach aligns with NICE guidance recommending referral to neurological services for suspected rapidly-progressive dementia, including CJD, after excluding reversible causes of cognitive decline .

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