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. 2024 Dec 26;14(12):e091884.
doi: 10.1136/bmjopen-2024-091884.

Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream

Rebeca Mozun  1 , Fabiën N Belle  2 , Andrea Agostini  3 , Matthias R Baumgartner  4 , Jacques Fellay  5   6 , Christopher B Forrest  7 , D Sean Froese  4 , Eric Giannoni  8 , Sandra Goetze  9   10 , Kathrin Hofmann  11 , Philipp Latzin  12 , Roger Lauener  13 , Aurélie Martin Necker  14 , Kelly Ormond  10   15 , Jana Pachlopnik Schmid  16   17 , Patrick G A Pedrioli  9   10   18   19 , Klara M Posfay-Barbe  20 , Anita Rauch  21 , Sven M Schulzke  22 , Martin Stocker  23 , Ben D Spycher  2 , Effy Vayena  10 , Tatjana Welzel  24 , Nicola Zamboni  9   25 , Julia E Vogt  3 , Luregn J Schlapbach  26   27 , Julia A Bielicki  24   28 , Claudia E Kuehni  2   12 ; SwissPedHealth consortium
Collaborators, Affiliations

Paediatric Personalized Research Network Switzerland (SwissPedHealth): a joint paediatric national data stream

Rebeca Mozun et al. BMJ Open. .

Abstract

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 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: Child; EPIDEMIOLOGY; Electronic Health Records; PAEDIATRICS.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1. SwissPedHealth governance. NDS, national data stream; SwissPedHealth, Paediatric Personalized Research Network Switzerland; WP, work package.
Figure 2
Figure 2. SwissPedHealth data flow. Numbers indicate: 1) Data flow from CDWs to NDS. Data transfer requests triggered by NDS B-space to CDWs, transfer via the Secure Encryption and Transfer Tool (SETT) tool. 2) Data flow from NDS to project specific spaces. Data transfer triggered by nested projects B-space or lighthouse B-space to NDS B-space. 3) Data flow from external data providers to project specific spaces. CDW, clinical data warehouses; CGAC, Clinical Genomic Analysis Centre; ChCR, Swiss childhood cancer registry; CMAC, Metabolomics Analysis Centre; CPAC, Clinical Proteomics Analysis Centre; FSO, Federal Statistical Office; KISPIZHRL, University Children’s Hospital (Kispi) Zurich Research Lab; LH, Lighthouse project; NDS, National Data Stream; NP, nested project; NP1, SwissPedGrowth; NP2, SwissPedCancer; NP3, SwissPedLung; NP4, SwissPedAntibio; SwissPedHealth, Paediatric Personalized Research Network Switzerland.
Figure 3
Figure 3. Study design of the SwissPedHealth lighthouse project. Development of a multi-omics workflow to discover rare diseases in children with life-threatening phenotypes. SwissPedHealth, Paediatric Personalized Research Network Switzerland.
Figure 4
Figure 4. Patient and public involvement activities in SwissPedHealth. SwissPedHealth, Paediatric Personalized Research Network Switzerland.
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