Canadian Paediatric Surveillance Program - 2003 Results

Presentations in 2003

(See http://www.cps.ca/ for a complete list of presentations with hotlinks.)

National

Vitamin D deficiency rickets among children living in Canada: A new look at an old disease. Ward LM, Gaboury I, Ladhani M, Zlotkin S. Presented at the CDA/CSEM Professional Conference, Ottawa, October 2003.

Risk factors for vitamin D deficiency rickets among children living in Canada: Results of an incidence study through the Canadian Paediatric Surveillance Program. Ward LM, Gaboury I, Ladhani M, Zlotkin S. Presented at the Canadian Society of Endocrinology and Metabolism's Annual Meeting, Ottawa, October 2003.

Puberty and growth in CHARGE association/ syndrome. Blake K. Presented at the 13th Dbl World Conference of Deafblindness, Mississauga, August 7, 2003.

Central nerves of CHARGE association/syndrome. Blake K. Presented at the 13th Dbl World Conference of Deafblindness, Mississauga, August 5 to 10, 2003.

CHARGE into the adolescent and adult decades. Blake K. Presented at the 13th Dbl World Conference of Deafblindness, Mississauga, August 5 to 10, 2003.

Neonatal herpes simplex virus infections in Canada. Wong T, Burton S, Cormier L, Embree J, Steben M, Rusen ID. Presented at the International Society for Sexually Transmitted Disease Research Conference, Ottawa, July 27 to 30, 2003.

Surveillance helping patients with orphan genetic disorders. Summers A, Berall G, Blake KD, Nowaczyk MJM, Desantadina MV. Presented at the 80th Annual Meeting of the Canadian Paediatric Society, Calgary, June 21, 2003.

Public health implications of the Canadian Paediatric Surveillance Program. Grenier D, Doherty J, Medaglia A. Presented at the 80th Annual Meeting of the Canadian Paediatric Society, Calgary, June 19, 2003.

C.H.A.R.G.E. account: The health economics of managing CHARGE syndrome. Budden H, Blake KD. Presented at the 80th Annual Meeting of the Canadian Paediatric Society, Calgary, June 18 to 22, 2003.

The incidence and prevalence of CHARGE association/syndrome in Canada. Issekutz KA, Smith IM, Prasad C, Graham JM, Blake KD. Presented at the 80th Annual Meeting of the Canadian Paediatric Society, Calgary, June 18 to 22, 2003, and at the 13th DbI World Conference of Deafblindness, Mississauga, August 7, 2003.

The cranial nerve anomalies of CHARGE association/syndrome (A/S). Lawand CMD, Blake KD, Prasad C, Graham JM Jr. Presented at the 80th Annual Meeting of the Canadian Paediatric Society, Calgary, June 18 to 22, 2003.

International Network of Paediatric Surveillance Units: A child's global village. Grenier D, Doherty J, Medaglia A. Presented at Child & Youth Health Congress, Vancouver, May 14, 2003, and at the Irish and American Paediatric Society Meeting, Ottawa, September 20, 2003.

Oral sensory experiences and feeding issues in CHARGE syndrome. Marche DM, Dobbelsteyn C, Rashid M, Blake KD. Presented at the 28th Annual Conference of the Canadian Association of Speech-Language Pathologists and Audiologists, St. John's, May 2003.

International

Genetic studies: A significant component of the Canadian Paediatric Surveillance Program. Summers A. Presented at the American Society of Human Genetics Annual Meeting, Los Angeles, November 5, 2003.

Challenging behavioural problems in children with genetic and rare conditions: Role of the Canadian Paediatric Surveillance Program. Grenier D, Doherty J, Medaglia A. Presented at the Europaediatrics 2003 Congress, Prague, October 22, 2003.

Adolescenthood and CHARGE syndrome. Blake K. Presented to Project Directors, National Technical Assistance Consortium - Office of Special Education Programs, Washington, October 2003.

Rare diseases research through surveillance: The Canadian experience. Grenier D, Doherty J, Medaglia A. Presented at the European Society of Paediatric Research Meeting, Bilbao, September 28, 2003.

Puberty in CHARGE. Blake K. Workshop presented at the 6th International CHARGE Syndrome Conference, Cleveland, July 25 to 27, 2003.

General endocrine issues in CHARGE. Blake K. Workshop presented at the 6th International CHARGE Syndrome Conference, Cleveland, July 25 to 27, 2003.

National study of paediatric hemolytic uremic syndrome in Canada. Sockett P, Proulx F. Presented at the 5th International Symposium on Shiga Toxin (Verocytotoxin)-Producing Escherichia coli Infections (VTEC 2003), Edinbugh, June 8 to 11, 2003.

Cerebral edema (CE) in pediatric diabetic ketoacidosis (DKA) in Canada. Cummings EA, Lawrence SE, Daneman D. Diabetes 2003; 52(Suppl1):A400. Presented at the 63rd Scientific Sessions of the American Diabetes Association, New Orleans, June 2003.

Funding

To date, funding for the surveillance program has been made available from the Centre for Infectious Disease Prevention and Control, Health Canada, as well as other government departments, organizations and companies interested in increased knowledge of uncommon childhood conditions and the practical improvement in prevention and treatment.

Funding is required for program management including administrative and financial support. Educational grants are welcome from all interested in monitoring and contributing to the improvement of health of Canadian children and youth.

We gratefully acknowledge funding from the following sources:

Government departments:

Health Canada

•	Public Health Agency of Canada
	•	Centre for Healthy Human Development
	•	Division of Childhood and Adolescence
	•	Health Surveillance and Epidemiology Division
	•	Healthy Communities Division Centre for Infectious Disease Prevention and Control
	•	Division of Community Acquired Infections
	•	Division of Immunization and Respiratory Diseases
	•	Division of Surveillance and Risk Assessment
•	Health Products and Food Branch
	•	Office of Nutrition Policy and Promotion
	•	Food and Nutrition Surveillance

Transport Canada

•	Safety and Security Group • Road Safety and Motor Vehicle Regulation

Non-governmental sources:

• CHARGE Syndrome Foundation, Inc.
  
• Dairy Farmers of Canada
  
• Fondation de la recherche sur les maladies du Québec
  
• GlaxoSmithKline
  
• IWK Health Centre
  
• Mead Johnson Nutritionals
  
• Merck Frosst Canada Ltd.
  
• North York General Hospital
  
• Ontario Prader-Willi Syndrome Association
  
• Striving for Excellence Fund, Mount Sinai Hospital
  
• The Physicians' Services Incorporated Foundation
  

Surveillance at Work

Overview

Surveillance is an important part of the practice of medicine allowing for the tracking and studying of conditions. Not only can the burden of disease be determined and interventions to prevent the occurrence of a disorder be assessed, but information collected can also allow development of future health policies to address the needs of patients with these conditions. The CPSP is designed to study uncommon disorders with high morbidity and mortality in childhood or rare complications of more common diseases of such low frequency that data collection nationally is required to generate a sufficient number of cases to derive meaningful results. When the CPSP Steering Committee reviews new study proposals, preference is given to studies that have strong public health importance or could not be undertaken any other way. All studies must conform to high standards of scientific rigour and practicality.

Upon initiation of a new study, program participants receive a summary of the protocol, including the case definition and a brief description of the condition. In addition to providing a uniform basis for reporting, this approach serves to educate and increase awareness of low-frequency conditions with high morbidity and/or mortality.

The CPSP uses a two-tiered reporting process to ascertain and investigate cases: an initial 'check-off' form and a detailed reporting form. The full process is summarized in Figure 1.

Reporting

The initial reporting form, listing the conditions currently under surveillance, is mailed monthly to practising Canadian paediatricians and relevant paediatric subspecialists and health-care providers. Respondents are asked to indicate, against each condition, the number of new cases seen in the last month, including 'nil' reports. A 'nil' report is very important in active surveillance, as the CPSP cannot simply assume that no reply means no cases.

Participants report all cases meeting the case definitions, including suspect or probable cases where there is some doubt about reporting. This sometimes leads to duplicate reports but avoids missed cases. Case ascertainment is monitored and verified by investigating duplicate reports and comparing data with relative programs or centres.

The CPSP assures the confidentiality of all information provided to the program. Only non-nominal patient information, such as the date of birth, sex of the child and comments on the condition, is requested for each reported case. This anonymous information is used to identify duplicates and is entered, as a reminder, on a detailed reporting form, which is sent to the original respondent to request case-specific information. Once the detailed report is returned to the CPSP, it is forwarded to the investigator for analysis. The investigator is responsible for contacting the respondent if further information is required. The CPSP is encouraged by the 96% response rate for completion of detailed questionnaires (see Table 1 for study breakdown).

Respondents who do not reply every month receive quarterly reminders. As well, information, including the monthly compliance rates and the number of cases reported, is mailed quarterly to all participants to keep them informed of progress.

To thank paediatricians and paediatric subspecialists for their tremendous commitment to, and support of, the CPSP, 1,664 personal certificates were sent to acknowledge participation in 2003, and 360 letters of thanks went to participants who reported a case in 2003. An early-bird draw was held and complimentary copies of the AAP publication Challenges in Pediatric Diagnosis were awarded to Drs. Bryan Magwood (MB) and Claudio Fregonas (ON). Lucky winners in the year-end draw for one of two prizes to attend the June 2004 CPS Annual Conference in Montreal were Dr. Esias Van Rensburg (BC) who responded for all months in 2003, and Dr. Philip Mantynen (ON) who completed and returned a questionnaire for a reported case.

TABLE 1 2003 detailed questionnaire completion rates
Studies/conditions	Reported cases	Pending	% Completion rate
Acute flaccid paralysis	84	0	100
CHARGE association/syndrome	37	1	97
Congenital rubella syndrome	2	0	100
Early-onset eating disorders	93	0	100
Lap-belt syndrome	8	0	100
Necrotizing fasciitis	27	0	100
Neonatal herpes simplex virus infection	18	0	100
Neonatal hyperbilirubinemia - severe	178	6	97
Prader-Willi syndrome	56	7	88
Vitamin D deficiency rickets	80	7	91
Total number of cases (all studies)	583	21	96

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