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Co-RESPOND: a federated network of cohorts on mental health and adversity during the COVID-19 pandemic. Challenges, solutions and recommendations for retrospective data harmonization

  • Papoula Petri-Romão
  • , Jutta Stoffers-Winterling*
  • , Charlotte Doerschner
  • , Jocelyne Jurgeit
  • , Philipp Gödde
  • , Irwin Hecker
  • , Maria Melchior
  • , Diana Czepiel
  • , Anke Witteveen
  • , Els van der Ven
  • , Marit Sijbrandij
  • , Roberto Mediavilla
  • , José Luis Ayuso-Mateos
  • , Pierre Smith
  • , Vincent Lorant
  • , Anna Monistrol Mula
  • , Josep Maria Haro Abad
  • , Katalin Gémes
  • , Ellenor Mittendorder-Rutz
  • , Matteo Monzio Compagnoni
  • Antonio Lora, Giulia Caggiu, Claudia Conflitti, Raffael Kalisch, Klaus Lieb
*Corresponding author for this work
  • Leibniz Institute of Resilience Research
  • Sorbonne Université
  • Vrije Universiteit Amsterdam
  • Universidad Autónoma de Madrid
  • Centro de Investigación Biomèdica en Red de Salud Mental (CIBERSAM)
  • Hospital Universitario de la Princesa
  • Sciensano
  • Université catholique de Louvain
  • Institut de Recerca Sant Joan de Déu (IRSJD)
  • Parc Sanitari Sant Joan de Déu
  • Karolinska Institutet
  • University of Milan - Bicocca
  • Local Health Authority
  • Johannes Gutenberg University Mainz

Research output: Contribution to journalArticleProfessional

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Abstract

Background: The SARS-Cov-2 pandemic was associated with a substantial rise in trauma and stressor exposure. The Co-RESPOND consortium (part of the EU horizon 2020-funded RESPOND project) has been initiated to study the impact on mental health, using longitudinal data of separate international cohorts. Aims: The Co-RESPOND initiative aims to retrospectively harmonize mental health and resilience data of ongoing longitudinal cohort studies at the individual participant level; to create an interoperable network of cohorts within a secure environment; to manage these data along with harmonization products (e.g. transformation procedures and variable dictionaries) according to the FAIR principles; and to keep this network live in order to add new data waves or to be joined by new cohorts. Methods: Data were harmonized retrospectively according to the Maelstrom guidance. A federated data network (FDN) was created using the OBiBa software suite. Results: To date, Co-RESPOND consists of nine European cohorts and one global cohort, including 50,885 individual participants. This paper presents Co-RESPOND as a case study for retrospective harmonization of decentralized data where teams collected and transformed data without prior coordination, facing methodological as well as regulatory challenges. The process of this project is outlined in detail, so it could be applied by other researchers for future projects. Its outcomes and the resulting data harmonization products are presented. Conclusions and outlook: The harmonized data are now ready to be shared with external partners for analyses, and Co-RESPOND is open for more partners to join. Lessons learned throughout the project will be reported, and established classification standards will be recommended for use to generate data sets that are available for joint analyses from the start. Trial registration:ClinicalTrials.gov identifier: NCT04556565.
Original languageEnglish
Article number2517920
JournalEuropean journal of psychotraumatology
Volume16
Issue number1
DOIs
Publication statusPublished - 2025

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

Keywords

  • COVID-19
  • FAIR publication
  • Mental health
  • adversity
  • cohort study
  • data sharing
  • federated data network
  • resilience
  • retrospective data harmonization
  • stressors

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