Key facts
- ANCJDR at the Florey Institute and University of Melbourne; authors include Steven J Collins, Christiane Stehmann, Genevieve M Klug, Catriona McLean (Alfred Hospital) and Colin L Masters.
- The Registry provides ante- and post-mortem diagnostic platforms and is linked to a CJD Support Group Network (now org-au-cjdsgn, which says it liaises with the Registry but is independent with no formal affiliation) and CJD Counselling Service.
- CSF fees listed from 1 September 2026 are AUD 250 domestic and AUD 500 international for biomarker tests; tissue codon 129 genotyping is AUD 100 and DNA extraction from brain tissue AUD 200.
- PRNP gene testing is done on blood or unfixed brain by the PathWest Neurogenetics unit in Nedlands, is voluntary, with genetic counselling recommended and no price or turnaround listed.
- The registry recommends storing extracted DNA from every suspected CJD patient so relatives keep a later option.
- The CSF service extends to New Zealand and South-East Asian countries as required.
Timeline
- 2026Current CSF fee schedule takes effect.
Sources for this page
- CJD surveillance in Australia: update to 31 December 2023 (Communicable Diseases Intelligence)
- CJD surveillance in Australia: update to December 2016 (Communicable Diseases Intelligence)
- CJD Support Group Network (Australia): Services we provide
- Australian National CJD Registry (The Florey): testing specifications (page read 2026-10-16)