Canadian Paediatric Surveillance Program
Reporting Methodology
Initial reporting: monthly with quarterly reminders
Detail reporting: follow-up and confirmation of case reports
Summary reporting
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 quarterly to all participants.
Initial reporting: monthly with quarterly reminders
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, as the CPSP cannot simply assume that no reply means no cases. Forms are returned to the CPSP office in a postage-paid envelope.
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.
‘Do I complete the monthly reporting form or toss it away?’ Paediatr Child Health 2001;6(2):83
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.
Quarterly reminders are 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. To keep participants informed of progress, monthly compliance rates and the number of cases reported are mailed quarterly to all participants.
Detail 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 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 investigator 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.
- During and upon completion of individual studies, investigators analyze data and submit papers for publication.
- On a quarterly basis, a report showing the provincial and total response rates is mailed to all participants.
- Annual Results are printed and distributed to participants and interested individuals and organizations:
(Investigators' guidelines)
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