Organisation

The Swiss Paediatric Surveillance Unit SPSU is a national system for monitoring rare paediatric conditions and rare complications of more common illnesses among children treated in hospitals in Switzerland. The SPSU is sponsored by paediatric switzerland and the Swiss Federal Office of Public Health (FOPH). It consists of a simple, flexible active reporting system, involving all paediatric clinics and enabling a rapid response to epidemiological emergencies. Since January 1995, the SPSU has facilitated monitoring of 36 rare conditions, many of which were published in peer reviewed journals.

The notification system is operated electronically and collects numbers of cases only. For each study a case definition is documented in a study protocol. Participating clinics can add a new case anytime via secure access on the SPSU-Website At the end of each month, the SPSU Secretariat invites all participating clinics to review their notifications for all ongoing studies and to indicate whether any cases were diagnosed. In the event of a case notification, the Secretariat informs the principal investigator of the respective study, who then sends a supplementary questionnaire to the reporting clinic. This questionnaire collects detailed clinical and epidemiological information on the case. Every two years, these results are compiled and published in a report.