Creutzfeldt-Jakob Disease

Toll Free: 1-888-489-2999

The Canadian Creutzfeldt-Jakob Disease Surveillance System (CJD-SS) conducts active surveillance for CJD in Canada and is operated by the Public Health Agency of Canada.

Drs. Michael Coulthart, Neil Cashman and Gerard Jansen are the joint principal investigators. The CJD-SS aims to collect relevant diagnostic and epidemiologic information about every person with CJD in Canada, obtained through consultation with physicians, antemortem and postmortem laboratory testing, review of medical records, and a detailed family interview.

The main purposes are to study the epidemiology and causes of human prion diseases in Canada, and to protect public health by reducing modifiable risks for prion transmission. The surveillance system operates on a reference-services model by offering comprehensive support to referring physicians for laboratory investigations, clinical consultation and education.

For more information regarding the Canadian Creutzfeldt-Jakob Disease Surveillance System please contact the study co-coordinator, Ms. Elina Olsen RN, at 1-888-489-2999.