[Process and outcome quality of the German Paediatric Surveillance Unit (ESPED)]. / Evaluation der Prozess- und Ergebnisqualität der Erhebungseinheit für seltene pädiatrische Erkrankungen in Deutschland (ESPED).

ABSTRACT

UNLABELLED The German paediatric surveillance unit (ESPED) was founded in 1992 with the objective to generate incidence data and to describe symptoms, diagnostic procedures, therapy and prevention for rare paediatric diseases requiring in hospital treatment. Every month the ESPED office sends a mailing card to the heads of all paediatric departments asking for the incident diagnosis of up to 12 conditions. In 2007 about 96% of the cards are returned. Each condition is represented by a principal investigator. Up till now surveillance of 52 conditions has been performed. Reports on the mailing card prompt immediate mailing of the full questionnaire. For 43 conditions the return rates were in the range of 70-100% and for 7 conditions <70% (unknown 2). The highest return rates were achieved if the principal investigator was supported by staff comprising at least two persons or if the mailing of the questionnaire was handled by the ESPED office. The scientific impact of the ESPED System was assessed by the impact factors of the journals, in which the respective ESPED studies were published. By August 31 (st) 2008 the investigators of 38 studies reported up to 7 publications per conditions surveyed. A total of 104 publications was reported 27 of these appeared in journals without an impact factor. Among the 77 other publications 10 appeared in journals with an impact factor >10. CONCLUSION: Surveillance in ESPED has contributed significantly to high quality research on rare conditions in children.