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Related Experiment Video

Updated: Jun 10, 2025

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Advancing healthcare through data: the BETTER project's vision for distributed analytics.

Matteo Bregonzio1, Anna Bernasconi2, Pietro Pinoli2

  • 1Datrix S.p.A., Milan, Italy.

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|October 17, 2024
PubMed
Summary

Implementing a FAIR data infrastructure and distributed analytics platform enhances healthcare data accessibility and quality for rare disease research. This improves data sharing across medical centers, benefiting practitioners and policymakers.

Keywords:
FAIR principlesdata spacedistributed analyticshealthcarerare diseases

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Area of Science:

  • Biomedical Informatics
  • Health Data Science
  • Rare Disease Research

Background:

  • Data-driven medicine is crucial for improving healthcare accessibility and quality.
  • Effective data availability is a key enabler for advancements in healthcare.

Purpose of the Study:

  • To propose and implement a robust data infrastructure for FAIR (Findable, Accessible, Interoperable, Reusable) data.
  • To integrate clinical, genomic, and imaging data within a distributed analytics platform.

Main Methods:

  • Utilizing the Personal Health Train paradigm for distributed healthcare data analysis.
  • Implementing FAIRification and data fusion techniques for diverse data types.
  • Establishing a data infrastructure across multiple medical centers.

Main Results:

  • Ensuring data, metadata, and results are findable, accessible, interoperable, and reusable.
  • Facilitating data sharing and analysis for the BETTER Horizon Europe project.
  • Focusing on rare diseases including intellectual disability and inherited retinal dystrophies.

Conclusions:

  • The developed infrastructure supports collaborative research in rare diseases.
  • Anticipated impacts include benefits for healthcare practitioners and potential influence on health policymakers.