February 23, 2023

Pediatric Personalized Research Network Switzerland (SwissPedHealth) – a Joint Pediatric National Data Stream

6th Call, NDS

Short Summary

Children represent one of the most vulnerable patient groups. Consequences related to disease, injury, and treatment may affect children and families for years, sometimes decades. Thanks to improvements in lifestyle and income, preventive measures and new drugs, child health in Switzerland has improved significantly in the last years. Diseases in children that were common in the past, such as infections or cancer, nowadays often can be successfully prevented or treated. Despite these improvements, severe disease during childhood can still be life-threatening: approximately 1 in 100 children will require intensive care support during the first years of life. In Switzerland, 4 in 1000 children die before their fifth birthday due to inborn or acquired illness or accidents. Many children suffer from congenital conditions and other chronic illnesses, resulting in life-long dependency on health care support. Children have their entire life ahead: better health during childhood means better health in adulthood and possibly healthier future generations. In addition, common conditions like obesity or chronic lung conditions are a long-term burden to children and their families.

Goals

SwissPedHealth includes several research projects which will show the benefits of the pediatric data stream. The “lighthouse project” aims to detect rare diseases in children with life-threatening conditions. As a novel aspect, the investigators study not only DNA which gives information on genes, but also RNA, which gives information on how proteins are built in the cells, and other molecules that give information on chemical processes within the cells. This data is analyzed using new and powerful computational methods, namely machine learning, to link clinical with biological data and find special patterns in children with rare diseases. The overall goal is to develop a first-of-its-kind workflow to detect rare diseases in critically ill children in a novel and more performant way. Knowing the reason why they are severely ill should speed up getting the right treatment. In addition, four “nested” projects use the data stream to focus on common child health problems that touch upon different areas such as obesity, cancer, lung disease, and antibiotics.

Significance

SwissPedHealth is led by Luregn Schlapbach (Kispi Zurich) and Julia Vogt (ETHZ) and encompasses a network of experts in pediatrics, rare diseases, critical care, epidemiology, omics, and computer science. It fosters strong public and patient involvement to ensure that the program addresses key aspects from the family perspective. This project offers a unique opportunity to obtain in an organized, systematic fashion pediatric data from hospitals, federal administration, and research. The new structures will allow high-quality patient-focused research for, and together with, Swiss children and their families.

Background

Despite the enormous importance of child health to society, the evidence to guide the best healthcare, such as diagnostics and therapies in children, remains limited. In Switzerland, the regional separation of hospitals makes it difficult to create effective and seamless research networks for children. Relevant data are produced daily when doctors document how they treat patients, but such information is not harmonized and often is of limited quality. The Pediatric Personalized Research Network Switzerland (SwissPedHealth) project, funded by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT), aims to make routine clinical data from children’s hospitals available in a standardized format and thus boost high-quality pediatric clinical research in Switzerland.