Canadian Paediatric Surveillance Program: Two years of a system for investigating unusual paediatric disorders

The Canadian Paediatric Surveillance Program (CPSP) is an active surveillance program for rare and unusual paediatric conditions of public health importance in Canada. The program was initiated in 1996 as a joint venture of the Canadian Paediatric Society (CPS) and the Laboratory Centre for Disease Control (LCDC), and is currently overseen by a steering committee representing the fields of paediatrics, epidemiology, genetics and public health. In the first two years of activity seven conditions were reported to the program via a monthly report card mailed to all clinically active paediatricians in Canada. Respondents were asked to indicate on the card the number of new cases seen for each condition and to ensure that all nil reports were also returned. Case reports were followed up with detailed report forms requesting case specific information which, when returned to the CPS, were forwarded to the principal investigator for assessment and analysis. Studies are for a minimum of one year, and new conditions may be included in the program following review by the steering committee and confirmation of ethical approval. Future development of the program includes linkage with a growing international network of paediatric surveillance units and the potential for collaboration in international studies of conditions of common interest.