The Canadian Paediatric Surveillance Program: Beyond collecting numbers

Traditionally, anecdotal data and retrospective case reports have been used for insight into the natural history, epidemiology and case management of rare diseases. This lack of information has often resulted in delayed recognition and diagnosis of rare diseases, increasing the risk of complications or death of children. Furthermore, the study of rare condiions has been hampered by the need to generate sufficient numbers to enable meaningful analysis and interpretation, a need that requires data collection from a large population. The Canadian Paediatric Surveillance Program (CPSP) was established in 1996 to contribute to the improvement of the health of children and youth by national surveillance and research into uncommon paediatric diseases and conditions. The CPSP provides the mechanism to enable the prospective collection of national epidemiological data on such diseases and conditions. After five years, has the CPSP risen to meet expectations? Is it based on scientific evidence? The CPSP has revealed itself to be a very sensitive surveillance tool, providing invaluable longitudinal, epidemiological information for public health decision-makers. The present paper reviews how the different communicable diseases on the CPSP monthly reporting form stand the test of the 1998 priority criteria for diseases under national surveillance set by Canada's Advisory Committee on Epidemiology.