Health protection – collection

Creutzfeldt-Jakob disease (CJD): guidance, data and analysis

The characteristics, diagnosis, management, surveillance and epidemiology of CJD.

Creutzfeldt-Jakob disease (CJD) is a rare and ultimately fatal degenerative brain disease. It is one of a group of diseases called Transmissible Spongiform Encephalopathies (TSEs) that affect humans and animals. TSEs are thought to be caused by the build up of an abnormal form of the naturally occurring ‘prion’ protein in the brain.

Variant CJD is likely to be caused by consuming meat from a cow that has been infected with a similar prion disease called bovine spongiform encephalopathy (BSE), also known as ‘mad cow disease’.

Iatrogenic CJD is very rare, and occurs when CJD is accidentally transmitted as a result of medical or surgical exposures.

For symptoms and general information on CJD, visit NHS Choices.

CJD section, Public Health England Colindale

The CJD section:

  • provides national advice and support to prevent the potential spread of CJD in healthcare setting
  • provides advice to local trusts, health boards and health protection teams on the implementation of the CJD incidents guidance
  • coordinates studies of the prevalence of abnormal prion protein
  • undertakes long term public health monitoring of individuals at increased risk of CJD

Creutzfeldt-Jakob disease (CJD) section

Public Health England
61 Colindale Avenue
London
NW9 5EQ

Diagnosis and management

Neurologists and other clinicians should follow the National referral system when reporting CJD cases. Clinicians are also invited to discuss suspected cases with the National CJD Research and Surveillance Unit (NCJDRSU) or National Prion Clinic.

Further diagnostic information about CJD can be found on the NCJDRSU website.

The CJD Support Network provides help and support for people with CJD, their families, carers and concerned professionals.

Advice on infection control related to dentistry can be found on the National Archives (TNA) website.

CJD Risk analyses and assessments are also available.

  1. Minimise transmission risk of CJD and vCJD in healthcare settings

    • Guidance
  2. CJD: information leaflets for patients and healthcare professionals

    • Promotional material
  3. CJD: public health action following report of new case or person at increased risk

    • Guidance

Epidemiology

The National CJD Research and Surveillance Unit (NCJDRSU) releases monthly information on the number of suspected CJD cases referred for diagnosis and followup, and the number of deaths of definite and probable cases in the UK.

The NCJDRSU also provides an annual update on the work of the unit in the previous 12 months, reflecting the unit’s core surveillance work.

  1. Creutzfeldt-Jakob disease (CJD) surveillance: biannual updates

    • Research and analysis