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History

National surveillance of rare paediatric conditions had its inception in 1986 with the establishment of the British Paediatric Surveillance Unit (BPSU). The formal establishment was precipitated by the failure of paediatricians to report cases of necrotizing fasciitis, Reye’s syndrome, Kawasaki disease, and hemolytic/hemorrhagic shock syndromes to the British Paediatric Association and the Public Health Laboratory Service.

In 1995, the Canadian Paediatric Society and the Laboratory Centre for Disease Control (Health Canada) formed a small working group to set up a national paediatric surveillance program modeled on the BPSU. After several months of planning and consultation, a joint pilot program for the surveillance of rare paediatric diseases and conditions was established and commenced activity in January 1996. Three conditions were selected for the pilot: acute flaccid paralysis (AFP), congenital rubella syndrome (CRS), and group B streptococcal infection (GBS). AFP was selected because the CPSP provided a means of both monitoring suspected cases of paralytic poliomyelitis and providing evidence of the elimination of indigenous wild poliovirus transmission towards certification of a polio-free status in Canada and the rest of the Americas in September 1994. CRS was selected because of the need to monitor progress towards attaining the goal of elimination of indigenous rubella infection during pregnancy by the year 2000. GBS was chosen because no Canadian data existed on the incidence of the infection.

A steering committee was established to guide the CPSP in serving the health needs of Canadian children and youth, as well as the research needs of the health care community whose prime concern is the care and health of children.

International developments

Following the success of the BPSU, the same methodology was adopted, and adapted in the 1990s to other countries whose paediatric services were amenable to active surveillance. A meeting of the European Units was held in Leiden during January 1995 with a view of sharing and standardizing protocols, case definitions and study periods. By 1996/97 the following units, including Canada, had been established: Australia, Germany, Latvia, the Netherlands, New Zealand, Switzerland and Malaysia.

In 1998, during the 22nd International Congress of Paediatrics in Amsterdam, the International Network of Paediatric Surveillance Units (INoPSU) was formed. The CPSP invited INoPSU to host its first scientific meeting during the Canadian Paediatric Society’s annual conference in June 2000, affording Canadian paediatricians an excellent occasion to benefit first-hand from this research dissemination. The meeting also provided a welcomed opportunity for sharing information on the various methodologies of surveillance and study results, and for increasing awareness of the value of surveillance while recognizing potential confidentiality issues. Joint collaborative studies are seen as an important method of advancing the knowledge of uncommon childhood disorders around the world.

1999-2013

In 1999, overall study results were most encouraging. Not only were cases of such rare conditions as Creutzfeldt-Jakob disease and subacute sclerosing panencephalitis found, but CPSP participants, recognizing the importance of the program, completed and returned a record number of questionnaires, providing investigators with valuable clinical, case-specific data. The CPSP even received queries about whether similar counterpart surveillance systems exist in other areas of health care.

The BPSU requested that Canada serve as a control for one of its studies; consequently, the study on the surveillance of Creutzfeldt-Jakob disease was expanded to include cases of progressive, intellectual and neurological deterioration. At the same time, the CPSP welcomed the participation of child neurologists for this study through a partnership with the Canadian Association of Child Neurology.

The CPSP added resource articles on current studies to the program. These resources provided additional feedback to participants and also contributed to the possibility of accumulating credits for their continuing education portfolio.

The CPSP’s fifth anniversary in 2000 provided an excellent opportunity to reflect on both its accomplishments to date and on its challenges for the future. Results on concluded studies emphasized the importance of undertaking timely epidemiological data collection to affect, and confirm, public health policy decisions. For example, with only five confirmed cases in four years, hemorrhagic disease of the newborn study results supported the CPS’s guidelines on the administration of intramuscular vitamin K to all newborns. The neonatal herpes simplex virus infection study provided incidence data before introduction of a vaccine, allowing for future post-marketing surveillance. Also, the rarity of subacute sclerosing panencephalitis (SSPE) cases (two in four years) is both a tribute to the success of the rubella/measles immunization program, as well as reassurance about their safety.

As of 2001, the CPSP felt that feedback loops be built into the program. Concentrating on knowledge transfer through a series of publications and presentations, the CPSP demonstrated its commitment to sharing information that would showcase the value of active surveillance and keep participants engaged in the program; examples are:

In 2002, the CPSP was expanded to allow investigators a cost-effective tool to survey participants on a one-time basis in order to identify the prevalence of a problem or to answer a specific question. In collaboration with Health Canada and with the support and cooperation of the Product Safety Bureau, a one-time survey was conducted to better understand the frequency and extent of injuries associated with baby walkers in Canada. A total of 1,214 paediatricians returned the survey, representing a 53.4% response rate. Data results contributed to the 2004 total sales ban. Subsequent surveys on injuries associated with baby products included infant bath seats, lap-belt syndrome, magnetic toys, cribs and strollers.

In 2008, the CPSP demonstrated it could be mobilized quickly to conduct timely surveillance in the event of a public health concern in children. The outbreak of renal stones and renal failure in very young children in China, associated with the consumption of powdered milk products contaminated with melamine, raised the question whether children in Canada were being similarly affected. Within 10 working days, a survey was sent out to all participants and results were available within three weeks. This rapid response from participants to the one-time survey provided the Public Health Agency of Canada the needed information that no cases had been found in Canada. Emergency response exemplifies the excellent added value of investing in a national network of active surveillance that is well connected with front-line paediatricians and public health officials.

In 2010, the CPSP and the Australian Paediatric Surveillance Unit became co-chairs of the international network (INoPSU). Goals for the network include: expanding to other countries, encouraging publication of collaborative and comparative papers, participating in the International Rare Disease Day and establishing closer contacts with other organizations who share similar goals.

In 2011, the CPSP celebrated its 15th anniversary and launched eCPSP, an electronic reporting system for monthly report forms. The program is very pleased with its success. As of December 2015, 72% of participants were signed up for electronic monthly reporting, and half of these responded within the first 24 hours of receiving the e-mail. The next phases of electronic reporting include performance monitoring, recruitment of offline participants to online reporting, and the addition of one-time surveys and detailed questionnaires.

Program evaluation

A formal program evaluation was undertaken in 2003 to answer important questions concerning the program’s strengths, weaknesses and future course of action. An extensive review by an international Expert Advisory Group (EAG) of the program’s policies, objectives, targets, strategies, action plans, performance and output resulted in a unanimous opinion that the CPSP represents excellent value for money. The achievement in this respect was seen as excellent and unsurpassed by any comparable program known to the EAG. The CPSP was seen as representing an important collaborative tool for surveillance, research and policy development. In this role, it was perceived as unique in Canada. In other words, it provides an important activity that would disappear in its absence, unless a much larger investment is made to replace it.

Following the excellent report card received for the evaluation of the CPSP, “Grand Rounds” presentations were given in university paediatric teaching hospitals across Canada to showcase the achievements of the program and to encourage researchers to submit new study proposals.