Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream.
Details
Serval ID
serval:BIB_0D97A1EE436B
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream.
Journal
BMJ open
Working group(s)
SwissPedHealth consortium
Contributor(s)
Agostini A., Rauch A., Drogen A.V., Necker A.M., Spycher B.D., Kahlert C., Forrest C.B., Kuehni C.E., Hagman C., Sean Froese D., Chopard D., Lawless D., Vayena E., Petrou E.I., Palumbo E., Giannoni E., Belle F.N., Xenarios I., Fellay J., Schmid J.P., Bielicki J.A., Vogt J.E., Hofmann K., Männik K., Harshman K., Ormond K., Posfay-Barbe K., Dac L.H., Leuenberger L.M., Schlapbach L.J., Jaboyedoff M., Oumelloul M.A., Stocker M., Baumgartner M.R., Zamboni N., Goebel N., Pedrioli PGA, Latzin P., Mozun R., Lauener R., Goetze S., Prader S., Boutry S., Schulzke S., Welzel T., Sutter T.M., Dimopoulou V., Zanotelli V.R., Deligianni X., Bovermann X., Shoman Y., Hartung A.
ISSN
2044-6055 (Electronic)
ISSN-L
2044-6055
Publication state
Published
Issued date
26/12/2024
Peer-reviewed
Oui
Volume
14
Number
12
Pages
e091884
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
Publication Status: epublish
Abstract
Children represent a large and vulnerable patient group. However, the evidence base for most paediatric diagnostic and therapeutic procedures remains limited or is often inferred from adults. There is an urgency to improve paediatric healthcare provision based on real-world evidence generation. Digital transformation is a unique opportunity to shape a data-driven, agile, learning healthcare system and deliver more efficient and personalised care to children and their families. The goal of Paediatric Personalized Research Network Switzerland (SwissPedHealth) is to build a sustainable and scalable infrastructure to make routine clinical data from paediatric hospitals in Switzerland interoperable, standardised, quality-controlled, and ready for observational research, quality assurance, trials and health-policy creation. This study describes the design, aims and current achievements of SwissPedHealth.
SwissPedHealth was started in September 2022 as one of four national data streams co-funded by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT). SwissPedHealth develops modular governance and regulatory strategies and harnesses SPHN automatisation procedures in collaboration with clinical data warehouses, the Data Coordination Center, Biomedical Information Technology Network, and other SPHN institutions and funded projects. The SwissPedHealth consortium is led by a multisite, multidisciplinary Steering Committee, incorporating patient and family representatives. The data stream contains work packages focusing on (1) governance and implementation of standardised data collection, (2) nested projects to test the feasibility of the data stream, (3) a lighthouse project that enriches the data stream by integrating multi-omics data, aiming to improve diagnoses of rare diseases and 4) engagement with families through patient and public involvement activities and bioethics interviews.
The health database regulation of SwissPedHealth was approved by the ethics committee (AO_2022-00018). Research findings will be disseminated through national and international conferences and publications in peer-reviewed journals, and in lay language via online media and podcasts.
SwissPedHealth was started in September 2022 as one of four national data streams co-funded by the Swiss Personalized Health Network (SPHN) and the Personalized Health and Related Technologies (PHRT). SwissPedHealth develops modular governance and regulatory strategies and harnesses SPHN automatisation procedures in collaboration with clinical data warehouses, the Data Coordination Center, Biomedical Information Technology Network, and other SPHN institutions and funded projects. The SwissPedHealth consortium is led by a multisite, multidisciplinary Steering Committee, incorporating patient and family representatives. The data stream contains work packages focusing on (1) governance and implementation of standardised data collection, (2) nested projects to test the feasibility of the data stream, (3) a lighthouse project that enriches the data stream by integrating multi-omics data, aiming to improve diagnoses of rare diseases and 4) engagement with families through patient and public involvement activities and bioethics interviews.
The health database regulation of SwissPedHealth was approved by the ethics committee (AO_2022-00018). Research findings will be disseminated through national and international conferences and publications in peer-reviewed journals, and in lay language via online media and podcasts.
Keywords
Humans, Switzerland, Precision Medicine/methods, Child, Pediatrics/organization & administration, Biomedical Research/organization & administration, Hospitals, Pediatric/organization & administration, EPIDEMIOLOGY, Electronic Health Records, PAEDIATRICS
Pubmed
Web of science
Open Access
Yes
Create date
08/01/2025 12:08
Last modification date
09/01/2025 7:05