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
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引用次数: 0
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.
期刊介绍:
The European Journal of Psychotraumatology (EJPT) is a peer-reviewed open access interdisciplinary journal owned by the European Society of Traumatic Stress Studies (ESTSS). The European Journal of Psychotraumatology (EJPT) aims to engage scholars, clinicians and researchers in the vital issues of how to understand, prevent and treat the consequences of stress and trauma, including but not limited to, posttraumatic stress disorder (PTSD), depressive disorders, substance abuse, burnout, and neurobiological or physical consequences, using the latest research or clinical experience in these areas. The journal shares ESTSS’ mission to advance and disseminate scientific knowledge about traumatic stress. Papers may address individual events, repeated or chronic (complex) trauma, large scale disasters, or violence. Being open access, the European Journal of Psychotraumatology is also evidence of ESTSS’ stand on free accessibility of research publications to a wider community via the web. The European Journal of Psychotraumatology seeks to attract contributions from academics and practitioners from diverse professional backgrounds, including, but not restricted to, those in mental health, social sciences, and health and welfare services. Contributions from outside Europe are welcome. The journal welcomes original basic and clinical research articles that consolidate and expand the theoretical and professional basis of the field of traumatic stress; Review articles including meta-analyses; short communications presenting new ideas or early-stage promising research; study protocols that describe proposed or ongoing research; case reports examining a single individual or event in a real‑life context; clinical practice papers sharing experience from the clinic; letters to the Editor debating articles already published in the Journal; inaugural Lectures; conference abstracts and book reviews. Both quantitative and qualitative research is welcome.