‘Do I complete the monthly reporting form or toss it away?’

For the past five years, Canadian paediatricians have actively participated in the surveillance of selected rare diseases and conditions, the monitoring of which is important to public health. To ensure the completeness of case ascertainment so that investigators can capture the data that are necessary for proper analysis of these rare occurrences, the Canadian Paediatric Surveillance Program (CPSP) has set a goal of achieving a 90% response rate. Thankfully, each month when 2350 paediatric care providers are faced with the decision ‘Do I complete the initial reporting form or toss it away?’, the majority of providers have opted to reply, even if they have not seen any of the rare diseases or conditions. The CPSP cannot assume that no reply means no cases and, therefore, needs to hear from all participants. Physicians who do not respond and who need motivation to participate should read on, and realize the importance and effect of some of the program’s results to date: confirmation that the administration of intramuscular vitamin K to newborn babies is effective; the rarity of cases of subacute sclerosing panencephalitis (two cases in five years), which is both a tribute to the success of the measles immunization program and reassurance about the safety of the measles vaccine; increased awareness and earlier diagnosis of a treatable, congenital disease such as the treatable, congenital disease Smith-Lemli-Opitz syndrome, which will improve the general health and behaviour of patients, as well as the quality of life of patients and their families. Clearly, the importance of a ‘nil’ or ‘nothing to report’ response cannot be overemphasized because it provides a meaningful response within the context of active surveillance and systematic review.