Academic Journal
Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream.
| Τίτλος: | Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream. |
|---|---|
| Συγγραφείς: | Mozun, R, Belle, FN, Agostini, A, Baumgartner, MR, Fellay, J, Forrest, CB, Froese, DS, Giannoni, E, Goetze, S, Hofmann, K, Latzin, P, Lauener, R, Martin Necker, A, Ormond, K, Pachlopnik Schmid, J, Pedrioli, PGA, Posfay-Barbe, KM, Rauch, A, M Schulzke, S, Stocker, M, Spycher, BD, Vayena, E, Welzel, T, Zamboni, N, Vogt, JE, Schlapbach, LJ, Bielicki, JA, Kuehni, CE, SwissPedHealth consortium |
| Στοιχεία εκδότη: | BMJ Publishing Group |
| Έτος έκδοσης: | 2024 |
| Συλλογή: | St George's University of London: Repository |
| Περιγραφή: | INTRODUCTION: 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. METHODS AND ANALYSIS: 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. ETHICS AND DISSEMINATION: The health database ... |
| Τύπος εγγράφου: | article in journal/newspaper |
| Περιγραφή αρχείου: | application/pdf |
| Γλώσσα: | English |
| ISSN: | 2044-6055 |
| Relation: | https://openaccess.sgul.ac.uk/id/eprint/117044/1/Paediatric%20Personalized%20Research%20Network%20Switzerland%20%28SwissPedHealth%29%20a%20joint%20paediatric%20national%20data%20stream.pdf; Mozun, R; Belle, FN; Agostini, A; Baumgartner, MR; Fellay, J; Forrest, CB; Froese, DS; Giannoni, E; Goetze, S; Hofmann, K; et al. Mozun, R; Belle, FN; Agostini, A; Baumgartner, MR; Fellay, J; Forrest, CB; Froese, DS; Giannoni, E; Goetze, S; Hofmann, K; Latzin, P; Lauener, R; Martin Necker, A; Ormond, K; Pachlopnik Schmid, J; Pedrioli, PGA; Posfay-Barbe, KM; Rauch, A; M Schulzke, S; Stocker, M; Spycher, BD; Vayena, E; Welzel, T; Zamboni, N; Vogt, JE; Schlapbach, LJ; Bielicki, JA; Kuehni, CE; SwissPedHealth consortium (2024) Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream. BMJ Open, 14 (12). e091884. ISSN 2044-6055 https://doi.org/10.1136/bmjopen-2024-091884 SGUL Authors: Bielicki, Julia Anna |
| DOI: | 10.1136/bmjopen-2024-091884 |
| Διαθεσιμότητα: | https://openaccess.sgul.ac.uk/id/eprint/117044/ https://openaccess.sgul.ac.uk/id/eprint/117044/1/Paediatric%20Personalized%20Research%20Network%20Switzerland%20%28SwissPedHealth%29%20a%20joint%20paediatric%20national%20data%20stream.pdf https://doi.org/10.1136/bmjopen-2024-091884 |
| Rights: | cc_by_nc_4 |
| Αριθμός Καταχώρησης: | edsbas.23F210C7 |
| Βάση Δεδομένων: | BASE |
| ISSN: | 20446055 |
|---|---|
| DOI: | 10.1136/bmjopen-2024-091884 |