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Canadian Paediatric Surveillance Program - 2003 Results
Foreword
Federal Minister of Health, Health Canada
As Minister of Health, I wish to congratulate the Canadian Paediatric Society on the successful completion of the eighth year of the Canadian Paediatric Surveillance
The knowledge generated by the CPSP enables paediatricians and the health-care community to educate other health-care professionals, improve the quality of life for children with rare conditions, and increase public awareness, both in Canada and internationally. Thank you to the 2,300 paediatricians who regularly take the time to return the monthly report.
Canadian society values its children. It is important that we foster and nurture their mental and physical well-being. In partnership, Health Canada and the Canadian Paediatric Society will continue to work towards the goal of improving the health and well-being of Canada's children.
I wish the Canadian Paediatric Society many years of success with the Canadian Paediatric Surveillance Program.
Director General, Centre for Infectious Disease Prevention and Control
I am pleased to accept the eighth annual report of the Canadian Paediatric Surveillance Program (CPSP). I am heartened by the success of the program, especially CPSP's leadership in strengthening the International Network of
I would like to reaffirm my commitment to the partnership between the Centre for Infectious Disease Prevention and Control (CIDPC) and the Canadian Paediatric Society (CPS). An Expert Advisory Group (EAG), convened to oversee the CPSP evaluation, emphasized the importance of the relationship by stating that "an important collaboration has been established between the CPS and Health Canada which is exemplar". The EAG also concluded that the CPSP is an invaluable tool for future expanded surveillance and/or specific outbreaks because the program's network of over 2,300 paediatricians, coupled with centralized coordination by the CPS, strategically enables it to rapidly respond to public health emergencies.
I would like to personally thank the CIDPC staff who have played, and will continue to play, a major role in the success of the program by serving in multiple capacities as program managers, members of the CPSP Steering Committee and/or principal investigators. The CIDPC continues to financially support the infrastructure of the program and to coordinate funding for several Health Canada studies. Departmental studies undertaken in 2003 include monitoring of acute flaccid paralysis, congenital rubella syndrome, neonatal herpes simplex virus infection, and early-onset eating disorders. Future and proposed departmental studies include paediatric serious and life-threatening adverse drug reactions and severe combined immunodeficiency syndrome.
My gratitude would not be complete without attributing the success of the program to the paediatricians of Canada who diligently complete the monthly check-off form and who provide detailed information for each reported case.
President of the Canadian Paediatric Society
Congratulations to us: They asked - We answered
If there was any doubt that Canadian paediatricians care and are interested in all matters that affect children and youth, look no further than our response to the CPSP.
On a regular basis, I get the monthly forms in my office from the CPSP. I must admit that some of the conditions I remember only vaguely from my medical school days, long, long ago. Yet, every month I fill out the form and send it back, knowing it is important to learn more about these conditions and, in some cases, to find out that they are not in fact so rare. And so it appears do many, many of my colleagues from all over the country because the response rate in 2003 was an astounding 83%.
The voluntary questionnaire completion rate was an unbelievable 96%, and 67 new study suggestions were forthcoming for further evaluation. These are truly remarkable rates, as anyone who has ever done any surveying can tell you. In fact, that is just what the Expert Advisory Group, led by Dr. Robert McMurtry, noted in their external evaluation when they praised the program. The surveillance project has raised awareness of the work of the Canadian Paediatric Society and paediatricians within our own government circles and internationally.
Congratulations to those who run the program, and to us. Well done!
CPSP Chairman
What a great year! Not only did the CPSP continue to reinforce the national collaborative network of active surveillance to provide reliable data on high-impact, low-frequency conditions, but at the same time, the program also underwent a very thorough external evaluation.
In the previous report, I mentioned that this formal program evaluation was being undertaken to answer important questions concerning the program's strengths, weaknesses and future course of action. To this end, an international Expert Advisory Group was formed to review the program's policies, objectives, targets, strategies, action plans, performance and output. I am pleased to report that after an extensive review, the program passed with flying colours. The group was unanimous in their 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 Expert Advisory Group".
As Steering Committee Chair, I am deeply grateful to Dr. Robert McMurtry and the members of the advisory group for their insight into the strengths of the CPSP as an active surveillance tool, their guidance in areas of future expansion and their vision of the CPSP's worth in the paediatric and public health research communities. I encourage you to read their report on page 14.
We are proud of the CPSP's achievements to date and are committed to enhancing its activities to continue making a major contribution to the health of Canadian children, by influencing paediatric practice and public health policy.
CPSP Steering Committee
Publications in 2003
Published papers related to studies
(See http://www.cps.ca/ for a complete list of abstracts with hotlinks.)
Paediatric adverse drug reactions can be fatal. Grenier D, Doherty J, Medaglia A. Paediatr Child Health 2003;8(4):218
Carrier frequency of the Smith-Lemli-Opitz IVS8-1G>C mutation of the DHCR7 gene in African-Americans. Wright BS, Nwokoro NA, Waye JS, Wassif CW, Nowaczyk MJM, Porter FD. Am J Med Genet 2003 (published on-line January 17)
Though published in 2004, the following papers are noteworthy:
Canadian Paediatric Surveillance Program : A developmental check-up. Scott J. Paediatr Child Health 2004;9(1):13-4
Canadian Paediatric Surveillance Program confirms low incidence of hemorrhagic disease of the newborn in Canada. Paediatr Child Health 2004;9(4):235-8
Highlights published in
Paediatrics & Child Health
(See http://www.cps.ca/ for a complete list of highlights with hotlinks.)
Do you know the answers? - CPSP Quiz. Paediatr Child Health 2003;8(10):615,641
The unrealistic quest to thinness. Paediatr Child Health 2003;8(9):563
Helping to prevent obesity and complications in children with Prader-Willi syndrome. Paediatr Child Health 2003;8(8):510
CPSP 2002 Results: What have we learned? Paediatr Child Health 2003;8(7):447
Lap-belt injuries: A view from the bedside. Paediatr Child Health 2003;8(6):373
Survey on lap-belt syndrome: Results and next steps.
Paediatr Child Health 2003;8(6):374
Call for new studies: Research opportunities. Paediatr Child Health 2003;8(5):297
How to improve your diagnostic tools for genetic disorders. Paediatr Child Health 2003;8(4):217
Is the risk of kernicterus rising? Paediatr Child Health 2003;8(3):150
Congenital rubella syndrome - Time to act on missed prevention opportunities. Paediatr Child Health 2003;8(2):107-8
Surveillance of rare genetic disorders: No longer orphan
diseases.
Paediatr Child Health 2003;8(1):55
