5 million CHF to make routine data from children’s hospitals available for science


21.06.2022 – The evidence base for diagnosing and treating diseases in children is narrow, and evidence often derived from research on adults. There is an urgent need to advance scientific knowledge to further improve healthcare for children.

Relevant data are produced daily, when doctors document how they treat patients, but such information is not harmonized and of limited quality. The project SwissPedHealth, newly funded by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT), will make routine clinical data from children’s hospitals available in a standardized format and thus boost high-quality clinical research in Paediatrics in Switzerland.

The Pediatric Personalized Research Network Switzerland (SwissPedHealth) is one out of four National Data Stream (NDS) projects that have been selected for funding by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT). The innovative SwissPedHealth project, worth 5 million CHF, will create joint structures for pediatric routine clinical data collection and research to address rare and common childhood diseases over the next 3 years.

The goal of SwissPedHealth is that routine clinical data from children’s hospitals in Switzerland (for example, on diagnostic investigations and therapies) are available for research, for conducting clinical trials, for informing health policies and for quality improvement. The project builds on SwissPedData, the national pediatric core dataset defined in an earlier SPHN infrastructure development project conducted by Claudia Kuehni and Ben Spycher from ISPM Bern in collaboration with all children’s hospitals. The implementation of the SwissPedData core dataset across participating hospitals is the centerpiece of SwissPedHealth.

Four nested projects will use SwissPedData to investigate key questions related to child health, including childhood obesity, cancer, lung health and antibiotic prescriptions. The collection, harmonization and preparation of the datasets from all hospitals and their analysis within the nested projects is coordinated jointly by Claudia Kuehni (ISPM, University of Bern) and Julia Bielicki (UKBB, University of Basel).

SwissPedHealth also includes a frontier lighthouse project to detect rare diseases in children with life-threatening diseases. In the lighthouse project, investigators will, for the first time, apply multi-omics (i.e. the simultaneous analysis of genes, proteins, and metabolic markers in a patient) and artificial intelligence to improve the recognition of rare diseases in critically ill children. The lighthouse project is led by Matthias Baumgartner (Kispi Zürich) and Jacques Fellay (EPFL).

The overall project lead of SwissPedHealth is with Luregn Schlapbach (Kispi Zürich) and Julia Vogt (ETH). SwissPedHealth is a network of experts in pediatrics, rare diseases, omics sciences, critical care, epidemiology, and computer science. SwissPedHealth fosters a strong public and patient involvement to ensure that the program addresses key requirements from the family perspective. The SwissPedHealth consortium bridges clinical, research and technical know-how from Swiss children’s hospitals and institutions including CHUV - University of Lausanne (Eric Giannoni), HUG - University of Geneva (Klara Posfay-Barbe), Inselspital Bern - University of Bern (Philipp Latzin), Ostschweizer Kinderspital St. Gallen (Roger Lauener), Kispi Zürich - University of Zurich (Luregn Schlapbach, Matthias Baumgartner, Sean Froese, Jana Pachlopnik Schmid), LUKS (Martin Stocker), UKBB – University of Basel (Julia Bielicki, Sven Schulzke), EPFL (Jacques Fellay), ETHZ (Julia Vogt, Karsten Borgwardt, Effy Vayena, Kelly Ormond), ETH PHRT-SMOC (Sandra Goetze, Patrick Pedrioli, Nicola Zamboni), ISPM - University of Bern (Claudia Kuehni, Ben Spycher), Institute of Medical Genetics - University of Zurich (Anita Rauch), and the Children’s Hospital of Philadelphia (Christopher Forrest) as international collaborator.

This pediatric data stream will set up new and sustainable structures to allow high quality patient-focused research for Swiss children and their families.