Australian National Creutzfeldt-Jakob Disease Registry

http://ancjdr.path.unimelb.edu.au
[email protected]

English

Australia

Collins S. Creutzfeldt-Jakob disease surveillance in Australia: update to December 2013. Commun Dis Intell Q Rep. 2014 Dec 31;38(4):E348-355.| Collins S. Enhanced geographically restricted surveillance simulates /Masters CL. Creutzfeldt-Jakob disease cluster in an Australian rural city. Annals of Neurology. 52(1):115-118, 2002 Jul. sporadic Creutzfeldt-Jakob disease cluster. Brain. 2009 Feb; 132(Pt 2):493-501. |

Clinical review of the illness raising concern for prion diseases, accepted as statistical case hen case criteria meets WHO surveillance criteria for CJD and associated prion diseases.

Prion disease
Primary Samples: Stabilised samples (frozen or fixed)

Primary Samples: Stabilised samples (frozen or fixed)

Yes
Data made publicly available after a specified time point
Apply to PI or co-ordinator at resource
No
English

Data held on computer based records
No
Data is held as individual records
Data held on cards
No
If available for a subset please specify number of patients and % of total cohort

Yes
No
No
No
No
Data summarised in database

Data collection ongoing|Data analysis ongoing
01/01/1970
Nil
Yes

n/a
CDI publications – http://www.health.gov.au/internet/main/publishing.nsf/content/cda-cjdanrep.htm and an extensive list of collaborative peer reviewed publications.

1001-5000 clinical cases
>15
The Registry is unusal as it is tasked with the public health surveillance of prion diseases for local and the Commonwealth Health Departments. The Registry provides specialist advice and diagnostic services, similar to other prion disease units oversease. As a specialist reference centre, the ANCJDR manages the clinical case evaluation and disease classification of individuals prior to cases inclusion in incidence and epidemiology reports. Classification uses WHO surveillance clinical criteria.. The Registry is also unusual as it involves clinically suspect notifications under noifiable diseases, while patients are usually alive and the illness isnt always clearly characerised due to the complexity of diagnosis and the lack of a single specific ante-mortem diagnostic test. Cases are routinely evaluated after death by the ANCJDR, relying either on pathological autopsy findings or ANCJDR evaluation of clinical details and test findings. Medico-demographic information is accessed from medical records and surviving family mmebrs assisting teh ANCJDR.
The detection and surveillance of Cruetzfeldt-Jakob diseaseand associated prion diseases in Australia.
Australian National Creutzfeldt-Jakob Disease Registry

Disease Registers
Australia
Prion disease
2016