Testing labs by country | The Generative Brain

Prion testing is concentrated in a small number of laboratories, partly because the assays need dedicated facilities and partly because national surveillance depends on seeing every case. The practical consequence is that a local laboratory usually cannot help, and the route to a result runs through a named reference centre with its own paperwork.

United Kingdom

The CSF laboratory at the University of Edinburgh describes itself as the UK National Reference RT-QuIC Testing Laboratory and provides a national and international diagnostic service for the analysis of CSF RT-QuIC. The Edinburgh services page confirms that the test remains available through the same laboratory and asks clinicians who want it to contact the laboratory directly. The laboratory cannot process samples without the accompanying CSF RT-QuIC request form, and since July 2025 reports results electronically only.

According to the CJD Support Network summary of UK arrangements after the National CJD Research and Surveillance Unit closed on 31 March 2025, the national laboratory continues with NHS funding and the test is provided without cost to the referring hospital, with results going directly to the referring clinician. The same page describes the National CJD Diagnostic Advisory Service at the University of Edinburgh led by Professor Richard Knight, and continuing neuropathology advice and support in Edinburgh. Clinical advice for suspected cases is routed to the National Prion Clinic at UCLH.

United States

The National Prion Disease Pathology Surveillance Center at Case Western Reserve University runs the CSF panel and the autopsy programme. Its CSF service covers 14-3-3 gamma and total tau by ELISA and RT-QuIC, for patients aged 12 or older with a history of a rapid neurodegenerative condition. Turnaround is about five business days from receipt, and no urgent testing is offered. The centre publishes reference ranges and a scale of post-test likelihoods, and reports its second generation RT-QuIC sensitivity as 90.3 percent and specificity as 98.5 percent.

The centre also coordinates brain-only autopsies for suspected prion disease, performed free of charge for US cases, with the centre covering autopsy-related expenses including CJD testing and transport between storage and the autopsy site. Results are released only to physicians.

Canada

The Prion Diseases Section of the National Microbiology Laboratory in Winnipeg performs the national CSF testing, and the surveillance system factsheet describes specialised laboratory tests provided through that laboratory. The published 2025 update covering 2016 to 2024 reports 2,677 CSF specimens analysed, with endpoint quaking-induced conversion positive in 95 percent of 284 autopsy-confirmed CJD cases, against 91 percent for total tau and 81 percent for 14-3-3. Among 35 confirmed non-CJD cases there was one false positive for endpoint QuIC, four for total tau and eight for 14-3-3. Twenty-five individuals with disease-causing PRNP mutations were excluded from the cohort, so these figures do not describe performance in genetic prion disease. The authors conclude that their findings support the use of QuIC for routine CJD diagnosis and surveillance.

Health care professionals must inform their local public health authority and are encouraged to notify the surveillance system, reachable on 1-888-489-2999 or at cjdsurveillance@phac-aspc.gc.ca.

Australia and neighbouring countries

The Australian National CJD Registry at The Florey provides routine diagnostic testing to assess suspected sporadic, familial and iatrogenic cases nationwide, and serves New Zealand and South-East Asian countries when required. CSF testing covers 14-3-3 protein by ELISA and RT-QuIC, both NATA and RCPA accredited, run weekly on Mondays with stated pauses over public holidays, the Christmas and New Year period, Easter and the Melbourne Cup Carnival. The registry’s own table gives 81.3 and 84.4 percent for the 14-3-3 ELISA and 92 and more than 99 percent for RT-QuIC, which the column layout suggests are sensitivity and specificity.

Tissue services include biopsy testing, codon 129 analysis, PrPSc detection and prion strain typing. Published prices in Australian dollars are 250 for domestic CSF samples from 1 September 2026 and 500 for international samples, with tissue work from 100 for codon 129 genotyping to 600 for DNA extraction with strain typing or for variant CJD testing from a tissue biopsy. PRNP genetic testing is carried out by the Neurogenetics Unit, Department of Diagnostic Genomics, PathWest Laboratory Medicine WA in Nedlands, is voluntary, and the registry recommends genetic counselling because of the medical, ethical, psychological and legal issues for relatives.

Germany

Centralised assessment of suspected human prion disease began in June 1993 at the CJD Surveillance Unit of the University Medical Center Goettingen, which health authorities designated the National Reference Center for Human Transmissible Spongiform Encephalopathies from January 2006. Notification of sporadic CJD is required, clinics are advised to contact the centre for case classification, and the centre advises clinicians on differential diagnosis and infection control.

Neuropathological prion diagnostics are also offered at the Institute of Neuropathology at Saarland University Medical Centre in Homburg, which describes a membrane adsorption assay on native tissue, Western blot typing to distinguish type 1 and type 2 aggregates, and paraffin-embedded tissue blotting on decontaminated sections. For brain biopsy generally it recommends an open biopsy with an intact tissue cube sent native to neuropathology, and it asks clinicians to make contact before the biopsy or autopsy is taken.

Italy

The National Registry of Creutzfeldt-Jakob disease and related disorders was established in 1993 at the Istituto Superiore di Sanita in Rome and combines surveillance with research. Its stated research aims include diagnostic criteria, new diagnostic investigations, biomarkers, characterisation of human TSE strains and the genetic forms of prion disease. It works with regional prion disease reference centres, the Ministry of Health, the National Blood Centre and international surveillance centres. The registry page does not list the individual tests it performs or how to send samples, so those should be settled with the registry directly on the contact details it publishes.

France

Most suspected cases reach the French network through biochemistry laboratories, which routinely forward their CSF 14-3-3 results, and physicians also notify cases directly to the network’s expert neurologists. The neuropathology department of the Salpetriere hospital coordinates the neuropathological network, alongside the national reference centre for prion diseases and a national unit for CJD care. Over 1992 to 2016, PRNP gene analysis was performed for 2,077 of 2,907 diagnosed cases, molecular typing of brain PrPres by Western blot in 926 cases, and autopsy in 2,114 suspected patients, of whom 1,476 were confirmed.

Denmark

Suspected cases are reported by physicians on Form 1515 to the Department of Infectious Disease Epidemiology at Statens Serum Institut, which then sends a CJD questionnaire about the clinical course and supplementary tests. Neuropathological examination involves staff at the Department of Neuropathology at Copenhagen University Hospital. Over 1997 to 2011 an average of 54 percent of notified patients were autopsied and classified as confirmed.

The handling rules that apply to every one of these laboratories are collected in samples and shipping. Ward and care home precautions are in hospitals and care homes, country pages for families are at countries, and the section index is for clinicians.

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