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About the CPSP
The Canadian Paediatric Surveillance Program (CPSP), a joint project of the Public Health Agency of Canada and the Canadian Paediatric Society, contributes to the improvement of the health of children and youth in Canada by national surveillance and research into childhood disorders that are high in disability, morbidity and economic costs to society, despite their low frequency.
The CPSP gathers data from over 2,500 paediatricians and paediatric subspecialists each month to monitor rare diseases and conditions in Canadian children. Other participants, such as coroners, paediatric surgeons and adult endocrinologists are enrolled in the program when research studies indicate their participation. These physicians cover a paediatric population of over seven million Canadian children and youth.
The program has steadily grown from three studies in the pilot year to over 50 conditions being studied since its inception, in 1996. Surveillance is an important part of the practice of medicine, allowing for the tracking and studying of conditions. Not only can surveillance help determine the burden of disease and assess interventions to prevent the occurrence of a disorder, the information collected can also allow development of health policies to address the needs of patients with these conditions.
The difficulty in recognizing rare disease can result in delayed diagnosis, increasing the risk of preventable complications or death. Emerging infections will initially be rare and may remain undetected allowing infection to spread extensively before action is taken. All such diseases are difficult to study as their low frequency often means that little may be known about their etiology, clinical spectrum, complications, pathological features, diagnosis, treatment and management. Data collection from a large and often geographically diverse population is required to generate a sufficient number of cases to derive meaningful data.
- To maintain and enhance an active national and collaborative population-based surveillance system to monitor low-frequency and high-impact conditions and diseases in Canadian children and youth.
- To involve paediatricians, paediatric subspecialists and other applicable medical professionals in related disciplines in the surveillance of low-frequency, high-impact childhood conditions that are of public health and medical importance.
- To facilitate research into these childhood disorders for the advancement of knowledge and the improvement of treatment, prevention and health-care planning.
- To encourage awareness and education within the medical profession and the general public of less common paediatric disorders.
- To respond rapidly to public health emergencies, where these relate to Canadian children and youth, by adaptation of surveillance activities or initiation of appropriate action/follow up.
- To participate in international paediatric surveillance efforts through the International Network of Paediatric Surveillance Units (INOPSU).
- To establish and maintain a strong working partnership between the Canadian Paediatric Society (CPS) and the Public Health Agency of Canada (PHAC) to support and collaborate around surveillance into child and youth issues in Canada.