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

doi:10.1080/20008066.2025.2517920

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

Research output: Contribution to Journal › Article › Academic › peer-review

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 language	English
Article number	2517920
Pages (from-to)	1-23
Number of pages	23
Journal	European Journal of Psychotraumatology
Volume	16
Issue number	1
Early online date	12 Aug 2025
DOIs	https://doi.org/10.1080/20008066.2025.2517920
Publication status	Published - 2025

Bibliographical note

Publisher Copyright:
© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Funding

This project has received funding from the European Union’s Horizon 2020 Research and Innovation program under grant agreement numbers 101016127 (RESPOND project) and 777084 (DynaMORE project). We thank the participants and the consortia of all the collaborating studies. The Co-RESPOND initiative uses OBiBa (www.obiba.org), a software suite developed by Maelstrom Research (www.maelstrom-research.org).

Funders	Funder number
Horizon 2020 Framework Programme	101016127, 777084

Keywords

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

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Petri-Romão, P., Stoffers-Winterling, J., Doerschner, C., Jurgeit, J., Gödde, P., Hecker, I., Melchior, M., Czepiel, D., Witteveen, A., van der Ven, E., Sijbrandij, M., Mediavilla, R., Ayuso-Mateos, J. L., Smith, P., Lorant, V., Monistrol Mula, A., Haro Abad, J. M., Gémes, K., Mittendorder-Rutz, E., ... Lieb, K. (2025). 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. European Journal of Psychotraumatology, 16(1), 1-23. Article 2517920. https://doi.org/10.1080/20008066.2025.2517920

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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.",

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language = "English",

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Petri-Romão, P, Stoffers-Winterling, J, Doerschner, C, Jurgeit, J, Gödde, P, Hecker, I, Melchior, M, Czepiel, D , Witteveen, A , van der Ven, E , Sijbrandij, M, Mediavilla, R, Ayuso-Mateos, JL, Smith, P, Lorant, V, Monistrol Mula, A, Haro Abad, JM, Gémes, K, Mittendorder-Rutz, E, Monzio Compagnoni, M, Lora, A, Caggiu, G, Conflitti, C, Kalisch, R & Lieb, K 2025, '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', European Journal of Psychotraumatology, vol. 16, no. 1, 2517920, pp. 1-23. https://doi.org/10.1080/20008066.2025.2517920

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. / Petri-Romão, Papoula; Stoffers-Winterling, Jutta; Doerschner, Charlotte et al.
In: European Journal of Psychotraumatology, Vol. 16, No. 1, 2517920, 2025, p. 1-23.

Research output: Contribution to Journal › Article › Academic › peer-review

TY - JOUR

T1 - 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

AU - Petri-Romão, Papoula

AU - Stoffers-Winterling, Jutta

AU - Doerschner, Charlotte

AU - Jurgeit, Jocelyne

AU - Gödde, Philipp

AU - Hecker, Irwin

AU - Melchior, Maria

AU - Czepiel, Diana

AU - Witteveen, Anke

AU - van der Ven, Els

AU - Sijbrandij, Marit

AU - Mediavilla, Roberto

AU - Ayuso-Mateos, José Luis

AU - Smith, Pierre

AU - Lorant, Vincent

AU - Monistrol Mula, Anna

AU - Haro Abad, Josep Maria

AU - Gémes, Katalin

AU - Mittendorder-Rutz, Ellenor

AU - Monzio Compagnoni, Matteo

AU - Lora, Antonio

AU - Caggiu, Giulia

AU - Conflitti, Claudia

AU - Kalisch, Raffael

AU - Lieb, Klaus

PY - 2025

Y1 - 2025

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AB - 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.

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KW - cohort study

KW - COVID-19

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KW - FAIR publication

KW - federated data network

KW - Mental health

KW - resilience

KW - retrospective data harmonization

KW - stressors

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Petri-Romão P, Stoffers-Winterling J, Doerschner C, Jurgeit J, Gödde P, Hecker I et al. 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. European Journal of Psychotraumatology. 2025;16(1):1-23. 2517920. Epub 2025 Aug 12. doi: 10.1080/20008066.2025.2517920

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

Abstract

Bibliographical note

Funding

Keywords

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