For many uncommon but important paediatric conditions we lack national data on incidence, disease burden, and short-term outcomes. We also lack evidence of the impacts of preventive public health measures on disease rates and outcomes. To address these important information gaps, Paediatric Surveillance Units (PSUs) have been established in 14 countries. All are based on the model developed by the British Paediatric Surveillance Unit. All PSUs facilitate national, prospective, active surveillance for a range of conditions, with monthly reporting by child health specialists. For each case reported, clinicians subsequently provide clinical and epidemiological data. This method provides considerable advantages over traditional passive reporting systems, including timeliness and increased rates of reporting and ascertainment.  The International Network of Paediatric Surveillance Units (INoPSU) was established in 1998. INoPSU facilitates international collaboration among member PSUs and allows for sharing of resources; simultaneous data collection and hence comparison of data from different geographical regions (figure 1).  Over 150 studies have been facilitated by INoPSU members on a range of infectious and vaccine preventable diseases, genetic and metabolic conditions, childhood injuries and mental health disorders. Over 10,000 paediatricians, servicing a population of >56 million children aged <15 years contribute data to PSUs each month. In this paper we describe the impact of data collected by PSUs, both individually, and collectively as members of INoPSU, on public health outcomes, clinical care and research.
- population surveillance
- public health
- rare diseases
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