Active Surveillance

The importance of surveillance to the practice of medicine cannot be overstated. Through the ongoing, systematic collection of data, the burden of disease can be determined, interventions to prevent the occurrence of a disorder can be assessed, and information collected can be used in the development of health policy. Surveillance takes research data into action.

The CPSP provides an innovative means to undertake active paediatric surveillance and increase awareness of childhood disorders that are high in disability, morbidity, mortality and economic cost to society, despite their low frequency. Preference is given to studies that have strong public health importance or could not be undertaken any other way.

Reporting methodology

The CPSP uses a two-tiered reporting process to ascertain and investigate cases: an initial ‘check-off’ form and a detailed reporting form. To keep participants informed of progress, monthly compliance rates and the number of cases reported are mailed or e-mailed quarterly to all participants.

Initial reporting: monthly with reminders

The initial reporting form, listing the conditions currently under surveillance, is mailed or e-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”, as the CPSP cannot simply assume that no reply means no cases.

Participants are encouraged to report all cases meeting the case definitions that come to their attention. If in doubt about whether or not to report, it is best to do so. This sometimes leads to duplicate reports but avoids missed cases. Duplicates are identified during case follow-up. The CPSP needs to hear back from all participants, whether they have seen a new case or not. Even a ‘nothing to report’ response is vital in assuring completeness of case ascertainment by helping the CPSP reach its goal of 90% response.

Zero reporting is the written confirmation that no new cases have been detected during the past month. When the CPSP does not receive the completed monthly form back, it cannot distinguish whether it means “no case detection” versus “failure to report”. Zero reporting removes this uncertainty.

Reminders are mailed and e-mailed to respondents who have not replied for all months of the year. These reminders have greatly improved response rates and the ascertainment of cases.

Detailed reporting: follow-up and confirmation of case reports

For each study initiated through the CPSP, 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 unusual or rare conditions.

While non-nominal patient information, such as the date of birth and sex of the child, as well as comments on the condition are requested for each reported case, the CPSP assures the confidentiality of all information provided to the program. This information is used to identify duplicates and is entered, as a reminder, on a detailed report form, which is downloadable online and can be sent to the original respondent to request case-specific information. The detailed report is returned to the CPSP when completed and then forwarded to the investigator for analysis. The CPSP office is responsible for contacting the respondent if further information is required to confirm or exclude a case. The detailed report forms are developed by the investigator and must receive Steering Committee and ethical approval before use.

Summary reporting

The CPSP is committed to sharing information to showcase the value of active surveillance and to keep participants interested and engaged in the program.