The Generative Brain
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Australian National CJD Registry (Florey Institute and University of Melbourne)

Australian National CJD Registry at the Florey Institute and University of Melbourne: runs CSF 14-3-3 and RT-QuIC testing, offers tissue codon 129 genotyping, links to the CJD Support Group Network and counselling, and takes international CSF samples (including from New Zealand and South-East Asia).

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

  1. 2026Current CSF fee schedule takes effect.
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