An innovative web based system for reporting rare diseases in paediatrics

BACKGROUND: Surveillance of rare diseases in children is an important aspect of public health. Rare diseases affect thousands of children worldwide. The Canadian Paediatric Surveillance Program (CPSP) has been in existence since 1996, and provides an innovative means to undertake paediatric surveillance and increase awareness of childhood disorders that are high in disability, morbidity, mortality, and economic costs to society, despite their low frequency. Traditionally, CPSP used manual paper-based reporting on a monthly basis, which although had an impressive response rate, it had inherent longer processing times and costs associated with it. OBJECTIVES: To provide an overview and evaluate an innovative web-based system that enables seamless reporting from participants across the country providing a quick, reliable and simple mechanism for the participants to submit data while yielding better data quality, timeliness and increased efficiencies. METHODS: In 2011, a proprietary electronic CPSP (eCPSP) system was developed to provide a simple, quick and reliable reporting environment for participants. It supports both the electronic and hardcopy reporting. The analysis presented in this paper was conducted based on usage data of this system. RESULTS: The response rates of the new eCPSP were found to be very favorable with adjusted rate of 80%, which equals the baseline. Approximately 50% of online participants report the first day they receive the notification e-mail. The response time was also reduced considerably. Furthermore, there has been significant reduction in data handling related activities (by almost 70%) from estimated 690 hours per year. Finally, the number of cases reported that do not fit the study case criteria has fallen, likely because participants can now immediately access the case definition and protocol via the online system. This has reduced both staff and investigator time for case processing. CONCLUSION: The eCPSP has modernized the CPSP program from paper-based reporting to efficient online technology while maintaining the core principles of the program. This simple and intuitive approach has proven to be an efficient approach cutting response times significantly while maintaining the desired response rates.