[Process and outcome quality of the German Paediatric Surveillance Unit (ESPED)]

Area of Science:

• Pediatric Epidemiology
• Rare Disease Surveillance
• Public Health Research

Background:

• Established in 1992, the German Paediatric Surveillance Unit (ESPED) aims to gather incidence data and clinical details for rare pediatric diseases requiring hospitalization.
• ESPED utilizes monthly mailing cards sent to pediatric department heads to collect diagnoses for up to 12 conditions.

Purpose of the Study:

• To assess the effectiveness and scientific impact of the ESPED system in monitoring rare pediatric diseases.
• To evaluate data collection methods and return rates for surveillance of specific conditions.

Main Methods:

• Monthly mailings of diagnosis cards to pediatric departments, with a 96% return rate in 2007.
• Follow-up questionnaires for reported conditions, achieving 70-100% return rates for 43 out of 52 surveyed conditions.
• Assessment of scientific impact through publication analysis in journals with and without impact factors.

Main Results:

• High return rates (70-100%) were achieved for most conditions, particularly when principal investigators had support staff or the ESPED office managed mailings.
• By August 2008, 104 publications resulted from ESPED data, with 10 appearing in high-impact factor journals (>10).
• ESPED surveillance has facilitated significant contributions to research on rare pediatric conditions.

Conclusions:

• The ESPED system is a valuable tool for generating high-quality research on rare pediatric diseases.
• Effective data collection and principal investigator support are key to successful disease surveillance.