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Accepted for/Published in: JMIR Public Health and Surveillance

Date Submitted: Jul 5, 2024
Date Accepted: Dec 1, 2024

The final, peer-reviewed published version of this preprint can be found here:

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

Amid C, van Roode MY, Rinck G, van Beek J, de Vries RD, van Nierop GP, van Gorp EC, Tobian F, Oude Munnink BB, Sikkema RS, Jaenisch T, Cochrane G, Koopmans MP

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

JMIR Public Health Surveill 2025;11:e63996

DOI: 10.2196/63996

PMID: 39934981

PMCID: 11835595

Mission (im)possible: A call for action. Lessons learned from a pilot to share a complex, linked COVID-19 cohort dataset for open science.

  • Clara Amid; 
  • Martine Y. van Roode; 
  • Gabriele Rinck; 
  • Janko van Beek; 
  • Rory D. de Vries; 
  • Gijsbert P. van Nierop; 
  • Eric C.M. van Gorp; 
  • Frank Tobian; 
  • Bas B. Oude Munnink; 
  • Reina S. Sikkema; 
  • Thomas Jaenisch; 
  • Guy Cochrane; 
  • Marion P.G. Koopmans

ABSTRACT

The COVID-19 pandemic proved how sharing of genomic sequences in a timely manner, as well as early detection and surveillance of variants and characterisation of their clinical impacts helped to inform public health responses. However, the area of (re-)emerging infectious diseases needs multidisciplinary teams to work together to understand and answer the complex questions related to public health. Our global connectivity requires interdisciplinary collaborations to happen at local, national and international levels and connecting data to understand the linkages between all factors involved. Here, we describe experiences and lessons learned from a COVID-19 pilot study, providing insights into the barriers and complexities of internationally sharing linked, complex cohort data sets from opportunistic studies for connected data analyses. Based on our own experiences, we also call for action and make recommendations to support data sharing.


 Citation

Please cite as:

Amid C, van Roode MY, Rinck G, van Beek J, de Vries RD, van Nierop GP, van Gorp EC, Tobian F, Oude Munnink BB, Sikkema RS, Jaenisch T, Cochrane G, Koopmans MP

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

JMIR Public Health Surveill 2025;11:e63996

DOI: 10.2196/63996

PMID: 39934981

PMCID: 11835595

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