About the CPSP
Mission
The Canadian Paediatric Surveillance Program (CPSP) aims to contribute to the improvement of the health of children and youth in Canada through national surveillance of childhood disorders that are high in disability, morbidity, and economic costs to society, despite their low frequency.
Who we are
The CPSP has been an international leader in rare paediatric disease surveillance since 1996. The CPSP is a partnership between the Canadian Paediatric Society, the Public Health Agency of Canada, and the paediatricians and paediatric subspecialists from across Canada who voluntarily participate in the Program. A scientific steering committee, comprised of experts in paediatrics, public health, epidemiology, and related disciplines, guides the Program.
What we do
The CPSP gathers data from approximately 2700 paediatricians, paediatric subspecialists, and other medical professionals each month to monitor rare diseases and emerging conditions in Canadian children and youth. The Program is a real-time epidemiologic tool for national paediatric health surveillance. The CPSP’s findings positively impact child health and guide paediatricians, researchers, and public health policy makers.
The CPSP is often the only national data collection mechanism available for the surveillance of rare childhood diseases. While rare diseases are by definition uncommon, together they affect thousands of children and pose a large burden for affected children, their families, and health systems. Rare disease surveillance is important because:
- Despite their low frequency, rare diseases can be high in disability, morbidity, and economic costs to society.
- Data collection from a large and often geographically diverse population is needed to derive meaningful data and identify regional differences.
- Rare diseases are difficult to study and little may be known about their etiology, clinical spectrum, diagnosis, treatment, and management.
- When rare diseases are not recognized, delayed diagnosis can increase the risk of preventable complications or death.
- Emerging infections will initially be rare and, without surveillance, may remain undetected, allowing them to spread extensively before action is taken.
Program objectives
- Maintain and enhance an active national population-based surveillance system to monitor low-frequency and high-impact conditions and diseases in children and youth in Canada
- Involve paediatricians, paediatric subspecialists, and other applicable medical professionals in the surveillance of rare childhood conditions that are of public health and medical importance
- Improve the understanding of low-frequency childhood disorders to inform better treatment, prevention, and health care planning
- Increase awareness within the medical profession and the public of rare paediatric disorders
- Respond rapidly to public health emergencies related to Canadian children and youth
- Participate in international paediatric surveillance efforts through the International Network of Paediatric Surveillance Units
- Maintain a strong working partnership between the Canadian Paediatric Society and the Public Health Agency of Canada to support and collaborate around surveillance into child and youth issues in Canada
