Help by country

Which country page do you need?

• India
• United Arab Emirates
• United States
• United Kingdom
• Canada
• Australia
• Israel
• Germany
• France

What is a national centre, and why does it come up?

Prion diseases are rare, so most hospitals see very few cases. Countries have answered that by setting up one national centre that collects the cases, advises the local doctors and runs the specialist laboratory work.

In the United Kingdom, the National CJD Research and Surveillance Unit in Edinburgh runs the national reference laboratory for the RT-QuIC test on spinal fluid and offers neuropathology advice, and the National Prion Clinic in London gives clinical advice on suspected cases. In the United States, the National Prion Disease Pathology Surveillance Center at Case Western Reserve University has, since 1997, coordinated autopsy and tissue examination nationally and runs the reference laboratory for spinal fluid and genetic testing. In Canada, the CJD Surveillance System at the Public Health Agency of Canada provides laboratory investigation, advice for health professionals and education, and takes calls on 1-888-489-2999. In Australia, the National CJD Registry, set up in October 1993 and now at the Florey in Melbourne, offers a biomarker panel, genetic testing of the prion protein gene and a brain-only autopsy at no cost to the family or the referring hospital.

Your own doctor contacts these centres. You do not have to arrange it yourself, though it is reasonable to ask whether it has been done.

What tends to differ?

Four things vary most from country to country. Which specialist tests are available in the country, or have to be sent abroad. Whether genetic counselling for families is funded and where it is held. Whether a family support organisation exists in your language. And whether prion disease has to be reported to public health, which it does in Canada, for example, in every province.

Diagnosis and tests explains the tests themselves in plain words. Genetic counsellors explains what a counsellor does and how people reach one, which is the right first step for any question about a gene that runs in a family.

My country is not on the list

The country pages are being added over time. Until yours is there, the national support organisations in other countries will often help someone from outside their own country find a local contact, and Understand and Care holds the general pages that apply wherever you are.

Questions about one person’s tests, treatment or inheritance belong with the treating neurologist or a genetic counsellor. Phone numbers and services above come from each centre’s own pages and can change.