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 hospitalised in Switzerland. The SPSU is sponsored by the Swiss Society of Paediatrics (SSP/SGP) and the 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 24 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 a secure access on the SPSU-Website. At the end of the month the SPSU secretariat invites each clinic to review their notifications regarding all current studies and whether they had cases diagnosed or not. In the event of a case notification, the SPSU secretariat informs the principal investigator of the corresponding study, who then sends out a supplementary questionnaire, pertaining to clinical and epidemiological parameters of the case, to the clinic. Once a year these results are collated and published in the annual report.