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A Call for Action: Lessons Learned From a Pilot to Share a Complex, Linked COVID-19 Cohort Dataset for Open Science.

Clara Amid1, Martine Y van Roode1, Gabriele Rinck2

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Sharing linked laboratory and clinical data is crucial for infectious disease surveillance. A pilot study demonstrated a model using European open science infrastructure to create connected data hubs for better outbreak preparedness.

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Area of Science:

  • Infectious disease epidemiology
  • Genomic data sharing
  • Open science infrastructure

Background:

  • The COVID-19 pandemic highlighted the need for timely genomic sequence sharing and variant surveillance.
  • Global connectivity necessitates interdisciplinary collaboration for infectious disease management.
  • Effective responses require integrated analysis of laboratory and clinical-epidemiological data.

Purpose of the Study:

  • To develop and evaluate a model for storing and sharing linked laboratory and clinical-epidemiological data.
  • To identify barriers and complexities in international sharing of complex cohort datasets.
  • To leverage European open science infrastructure for connected data analyses.

Main Methods:

  • A pilot study utilizing European open science infrastructure.
  • Development of connected data hubs linking clinical-epidemiological and laboratory data.
  • Application of FAIR (Findable, Accessible, Interoperable, Reusable) principles for data management.
  • Analysis of an event timeline and critical path for dataset sharing.

Main Results:

  • Established connected data hubs by building upon existing European Nucleotide Archive infrastructure.
  • Successfully linked human clinical-epidemiological data (controlled access) with high-dimensional laboratory data (open access).
  • Identified key barriers and complexities in international data sharing for opportunistic studies.

Conclusions:

  • Existing infrastructure can facilitate rapid development of data hubs for infectious disease research.
  • Recommendations are provided to improve data sharing for enhanced outbreak preparedness and response.
  • Interdisciplinary and international collaboration is essential for managing emerging infectious diseases.