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

Rebeca Mozun1, Fabiën N Belle2, Andrea Agostini3

  • 1Department of Intensive Care and Neonatology and Children's Research Center, University Children's Hospital Zürich, Zurich, Switzerland.

BMJ Open
|December 26, 2024
PubMed

Insights

The SwissPedHealth network is building a sustainable infrastructure for paediatric research using standardized clinical data. This initiative aims to improve personalized care and evidence generation for children in Switzerland.

Area of Science:

  • Pediatric healthcare research
  • Digital health transformation
  • Personalized medicine infrastructure

Background:

  • Limited evidence base for pediatric procedures necessitates improved data generation.
  • Digital transformation offers opportunities for data-driven, personalized pediatric care.
  • The SwissPedHealth network addresses the urgent need for better pediatric healthcare provision.

Purpose of the Study:

  • To establish a sustainable and scalable infrastructure for pediatric clinical data in Switzerland.
  • To make routine pediatric clinical data interoperable, standardized, and quality-controlled.
  • To prepare data for observational research, quality assurance, clinical trials, and health policy creation.

Main Methods:

  • Initiated in September 2022, co-funded by SPHN and PHRT.
  • Develops modular governance and regulatory strategies, leveraging SPHN automatisation procedures.
  • Involves a multisite, multidisciplinary Steering Committee with patient and family representatives.
  • Includes work packages on data standardization, feasibility testing, multi-omics integration for rare diseases, and public/patient engagement.

Main Results:

  • The health database regulation has been approved by the ethics committee (AO_2022-00018).
  • The network is developing standardized data collection and integration methods.
  • Initial projects are underway to test the feasibility and utility of the data stream.
  • Engagement with families and bioethics is integrated into the project.

Conclusions:

  • SwissPedHealth is building essential infrastructure for data-driven pediatric research in Switzerland.
  • The network aims to enhance personalized care and evidence generation for children.
  • Standardized, interoperable data will support research, quality improvement, and policy development.
Abstract

Keywords:
ChildEPIDEMIOLOGYElectronic Health RecordsPAEDIATRICS

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