Evidence map›Paper›PMID 39934981›Full record

ArticleJMIR public health and surveillance2025

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 and 3 more

Abstract read
In one paragraph

Article in JMIR public health and surveillance, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Clara Amid *Department of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0001-6534-7425
Martine Y van Roode *Department of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0002-8427-0264
Gabriele RinckEuropean Molecular Biology Laboratory (EMBL), European Bioinformatics Institute (EBI), Wellcome Genome Campus, Hinxton, Cambridgeshire, United Kingdom.ORCID 0000-0001-6428-3431
Janko van BeekDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0001-7463-9411
Rory D de VriesDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0003-2817-0127
Gijsbert P van NieropDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0003-1622-8248
Eric C M van GorpDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0001-6415-6678
Frank TobianHeidelberg Institute of Global Health (HIGH), Heidelberg University Hospital (UKHD), Heidelberg, Germany.ORCID 0000-0003-2380-0003
Bas B Oude MunninkDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0002-9394-1189
Reina S SikkemaDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0001-7331-6274
Thomas JaenischHeidelberg Institute of Global Health (HIGH), Heidelberg University Hospital (UKHD), Heidelberg, Germany.ORCID 0000-0002-9464-571X
Guy CochraneEuropean Molecular Biology Laboratory (EMBL), European Bioinformatics Institute (EBI), Wellcome Genome Campus, Hinxton, Cambridgeshire, United Kingdom.ORCID 0000-0001-7954-7057
Marion P G KoopmansDepartment of Viroscience, Erasmus Medical Center (Erasmus MC), Dr Molewaterplein 40, Rotterdam, 3015 GD, Netherlands, 31 107044770.ORCID 0000-0002-5204-2312

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Unlabelled: The COVID-19 pandemic proved how sharing of genomic sequences in a timely manner, as well as early detection and surveillance of variants and characterization of their clinical impacts, helped to inform public health responses. However, the area of (re)emerging infectious diseases and our global connectivity require 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 aimed at developing a model for storage and sharing linked laboratory data and clinical-epidemiological data using European open science infrastructure. We provide insights into the barriers and complexities of internationally sharing linked, complex cohort datasets from opportunistic studies for connected data analyses. An analytical timeline of events, describing key actions and delays in the execution of the pilot, and a critical path, defining steps in the process of internationally sharing a linked cohort dataset are included. The pilot showed how building on existing infrastructure that had previously been developed within the European Nucleotide Archive at the European Molecular Biology Laboratory-European Bioinformatics Institute for pathogen genomics data sharing, allowed the rapid development of connected "data hubs." These data hubs were required to link human clinical-epidemiological data under controlled access with open high dimensional laboratory data, under FAIR (Findable, Accessible, Interoperable, Reusable) principles. Based on our own experiences, we call for action and make recommendations to support and to improve data sharing for outbreak preparedness and response.

Indexed as

COVID-19Information DisseminationCohort StudiesEuropeHumansPandemicsPilot ProjectsSARS-CoV-2COVID-19data managementdata sharingemerging infectious diseaseglobal healthopen science

Identifiers

PMID39934981
PMCPMC11835595

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.