Rakic, Milenko; Jaboyedoff, Manon Lucile; Bachmann, Sara; Berger, Christoph; Diezi, Manuel; do Canto, Philipp; Forrest, Christopher B.; Frey, Urs; Fuchs, Oliver; Gervaix, Alain; Gluecksberg, Amalia Stefani; Grotzer, Michael; Heininger, Ulrich; Kahlert, Christian R.; Kaiser, Daniela; Kopp, Matthias V.; Lauener, Roger; Neuhaus, Thomas J.; Paioni, Paolo; Posfay-Barbe, Klara; ... (2021). Clinical data for paediatric research: the Swiss approach [meeting report]. BMC Proceedings, 15(S13), p. 19. BioMed Central 10.1186/s12919-021-00226-3
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Continuous improvement of health and healthcare system is hampered by inefficient processes of generating new evidence, particularly in the case of rare diseases and paediatrics. Currently, most evidence is generated through specific research projects, which typically require extra encounters with patients, are
costly and entail long delays between the recognition of specific needs in ealthcare and the generation of necessary evidence to address those needs. The Swiss Personalised Health Network (SPHN) aims to improve the use of data obtained during routine healthcare encounters by harmonizing data across Switzerland and facilitating accessibility for research. The project “Harmonising the collection of health-related data and biospecimens in paediatric hospitals throughout Switzerland (SwissPedData)” was an infrastructure development project funded by the SPHN, which aimed to identify and describe available data on child health in Switzerland and to agree on a standardised core dataset for electronic health records across all paediatric teaching hospitals. Here, we describe
the results of a two-day symposium that aimed to summarise what had been achieved in the SwissPedData project, to put it in an international context, and to discuss the next steps for a sustainable future. The target audience included clinicians and researchers who produce and use health-related data on children in Switzerland.
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