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May 2003

Public Health Agency of Canada's Creutzfeldt-Jakob Disease (CJD) Surveillance System

CJD is a rare disease that affects the central nervous system. There are two types of CJD, classical and a new form, called variant CJD. In 1998, Health Canada launched a national CJD surveillance system to monitor for the disease in Canada. This comprehensive surveillance system is one of the finest in the world.

The system relies on Canadian specialist physicians such as neurologists, geriatricians, neurosurgeons, neuropathologists, infection control practitioners and infectious disease physicians, who participate in a national network. These physicians report all suspected cases of classical or variant CJD to a toll-free line, where a standard questionnaire is used to collect information.

If the suspected case meets certain criteria, physicians are asked to seek consent from the patient and family to enroll the case. Then, Public Health Agency of Canada officials conduct interviews and review medical records of the patient. They coordinate and conduct special laboratory testing which assists in the diagnosis. The Public Health Agency of Canada also provides state-of-the-art neuropathology diagnostic services for examination of the brain tissue, generally after death of the patient. This is the only way of confirming the diagnosis of either classical or variant CJD.

Each year, the Public Health Agency of Canada routinely investigates about 80 to 100 reports of suspected classical CJD and only a few reports of suspected variant CJD. On average, about 30 cases of classical CJD are confirmed each year in Canada. Many reports of initially suspected classical CJD are later diagnosed as Alzheimer's Disease or other neurological disorders.

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