About CJD

Creutzfeldt–Jakob disease (CJD) is a very rare and serious disease. It causes the brain to degenerate and become spongy, leading to dementia and death.

CJD belongs to a group of rare diseases known as transmissible spongiform encephalopathies (TSE) or prion diseases. These diseases can affect humans and animals. The best-known form of TSE is bovine spongiform encephalopathy (BSE), or ‘mad cow’ disease.

Disease type: 
Other notifiable
Vaccination available under NIP: 
No
Notifiable disease: 
Yes

Prevention, symptoms and diagnosis

For information about symptoms and diagnosis, see healthdirect's CJD page.

The CJD infection control guidelines provide recommendations for infection prevention and control procedures to reduce the risk of transmission of CJD in health care settings.

Surveillance and reporting

CJD is a nationally notifiable disease.

The Australian National Creutzfeldt–Jakob Disease Registry monitors and reports on cases of CJD and other TSEs on behalf of the Australian Government. It also provides expert advice on diagnoses, epidemiology and infection control matters in relation to TSEs in Australia.

For more information on CJD in Australia, you can search Communicable Diseases Intelligence

The 2021 CJD review final report offers an independent review of the public health response to CJD and the Australian Human Pituitary Hormone Program (AHPHP), including an evaluation of:

  • the Australian National Creutzfeldt–Jakob Disease Registry
  • CJD Support Group Network
  • the ongoing support needs of AHPHP participants and their families.

Support

The CJD Support Group Network offers support, information and assistance to people suffering from or at risk of CJD, and to their families.

Participants in the AHPHP can seek a Medical In-Confidence Letter (MICL) from the Commonwealth Chief Medical Officer to give to their health provider to help with their treatment. Contact us to request an MICL.

Last updated: 
22 July 2022