Australian National Creutzfeldt-Jakob Disease Registry

Information

Creutzfeldt-Jakob disease (CJD) is one of the human forms of the transmissible spongiform encephalopathies (TSE), also referred to as prion diseases. Prion diseases mostly occur as a chance event (sporadic CJD), but can be in rare cases attributed to a genetic mutation (genetic CJD) or be acquired through a transmission event (iatrogenic forms or variant CJD).

The ANCJDR is under contract to the Commonwealth Department of Health and is responsible for the national surveillance of clinically suspected and diagnosed human prion diseases in Australia.

The key objectives of the ANCJDR are:

  • Diagnostic testing of CSF specimens (eg 14-3-3), PrPres testing of tonsil biopsies and molecular sub-typing of sporadic CJD using brain tissue (PRNP codon 129 and prion protein glycotype)
  • National surveillance and epidemiology of all human TSEs (further explanations can be found in the “infection control and surveillance” section and “information about CJD and TSEs” section)
  • Notifications and public health risk assessments in VIC, NSW and QLD
  • Secretariat and expert advice to the national incident panel for infection control
  • Education and expert advice to clinicians as the national reference centre for human TSEs
  • Prion research, nationally and internationally, in collaboration with other institutions.
Registry Location Australia
Registry Participation CJD was made a notifiable disease in all states and territories of Australia as of June 2006. Most initial notifications to the ANCJDR arise through diagnostic testing available through the Registry and this occurs prior to health department notification.
Registry Contact

Australian National Creutzfeldt-Jakob Disease Registry

The Florey Institute of Neurosciences and Mental Health

T: 61 3 8344 1949

F: 61 3 9349 5105

E: ancjd-reg@unimelb.edu.au

The CJD Support Group Network provides a 24 hour hotline (1800 052 466) and is able to contact the ANCJDR coordinator in urgent matters.
Adding New Patients to Registry

If your family has been affected by CJD and you would like to contribute to the ANCJDR’s surveillance efforts, please contact the ANCJDR coordinator.
Please see the website for more information

florey.edu.au