THE CANADIAN PAEDIATRIC SURVEILLANCE PROGRAM (CPSP): AN EPIDEMIOLOGICAL TOOL IN ACTION

Doherty J, Grenier D, Medaglia A

CPSP Working Group, Canadian Paediatric Society, Ottawa, Canada

 

Purpose: To describe the methodology and accomplishments of a pan-Canadian surveillance system to ascertain rare conditions.

Methods: Via a monthly report form, 2350 paediatricians identify 12 rare diseases using standardized definitions and protocols.

Results: CPSP is achieving 83% initial response rate and 94% completion of the follow-up detailed questionnaire. Surveillance of acute flaccid paralysis, congenital rubella syndrome (CRS) and subacute schlerosing panencephalitis (SSPE) have confirmed the success of systematic vaccination programs, with the last case of wild poliovirus infection recorded in 1994, one CRS confirmed case per year and only 2 SSPE cases in the last 5 years. Hemorrhagic disease of the newborn confirmed the importance of the Canadian Paediatric Society¡®s recommendation for intramuscular vitamin-K injections to all newborns. Cerebral edema in diabetic ketoacidosis has a higher incidence than recent literature reports and has generated an educational resource for paediatricians. The rare genetic condition, Smith-Lemli-Optiz, has achieved an earlier diagnosis and a sufficient incidence rate to potentially recommend a systematic postnatal screening program.

Conclusion: The CPSP is a model of active ascertainment using a timely, feasible, and cost-effective tool. It has unraveled vital information, improving our diagnosis, management and quality of life of the children and youth affected by these conditions. It offers opportunities for international networking with other programs. 

 
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