Collaborating to make traumatic stress research data “FAIR”
Theme leader: Nancy Kassam-Adams
The FAIR Guiding Principles for scientific data stewardship state that data should be Findable, Accessible, Inter-operable, and Re-usable (FAIR). These principles are part of the growing movement toward more open and transparent science. Making traumatic stress research data more FAIR can promote better science, enhance understanding of trauma impact and recovery, and ultimately benefit trauma-exposed individuals and communities around the world. But to date most traumatic stress studies have not been designed with data preservation, sharing, or re-use in mind. See also Kassam-Adams & Olff (2020).
Projects in the FAIR Data theme will create resources that can facilitate FAIR data across the field of traumatic stress studies.
Projects span the research data lifecycle. Our projects are making it easier to FIND and RE-USE traumatic stress data resources, creating ACCESSIBLE data archives focused on traumatic stress research, and building tools to help traumatic stress researchers implement FAIR data practices.
BUILDING FAIR DATA TOOLS & INFRASTRUCTURE
1. FINDABLE TRAUMA DATA
Indexing traumatic stress datasets and data resources around the world
Can we make traumatic stress data more findable? As a first step, we are indexing available data sets and data resources about potentially traumatic experiences and consequences of those experiences. Check out the FAIR Datasets index here.
How you can help: Suggestions welcome! Use this form to tell us about data resources we should know about. We aim to include data resources across disciplines, from around the world, about a wide range of types of trauma and outcomes, and we are particularly interested in including research by those who have historically been underrepresented.
2. TOOLKIT FOR FAIR TRAUMATIC STRESS DATA
Creating a toolkit of resources to help traumatic stress researchers use FAIR data practices
An international group of researchers is identifying FAIR data tools for each part of the lifecycle of a study. This project will bring together existing resources, and create new resources if needed, to provide an accessible FAIR data toolkit for traumatic stress researchers.
Workgroup: Matthew Price (US), Ateka Contractor (US), Chris Hoeboer (Netherlands)
** NEW TOOL: Check out our Zotero library of FAIR data publications in the traumatic stress field. Tracking FAIR data methods and data re-use in our field. Please send suggestions for any additional references to email@example.com
3. REUSABLE TRAUMA DATA
Describing, organizing, and harmonizing traumatic stress studies and data
“Sharing data is not enough - data need to tell their stories.” This project focuses on key aspects of data reusability: Metadata, ontologies, and harmonization. We are working to better: (a) Describe our data: with metadata for traumatic stress research studies, methods, and variables, (b) Connect our studies and data: developing machine-actionable ontologies and tools to use them, and (c) Develop and share approaches to data harmonization for cross-study analyses.
INTEGRATIVE DATA PROJECTS
4. TRAUMATIC GRIEF
Building an archive for data on adult and childhood grief after traumatic and nontraumatic loss
The Measurements Archive of Reactions to Bereavement from Longitudinal European Studies (MARBLES) is pooling data from several research programs on grief in adults and children to build a data archive that can be used for continuing research on symptoms, course, and correlates of grief following traumatic and nontraumatic loss. This project is examining ways to expand this initiative, enlarge the data archive, and develop options for re-use of these data.
5. CHILD TRAUMA
Sustaining / expanding the Child Trauma Data Archives
This project is supporting the sustainability and use of the Child Trauma Data Archives. These currently include the Prospective studies of Acute Child Trauma & Recovery (PACT/R) Data Archive - an established archive of over 30 prospective (non-intervention) studies, the Child Trauma Prevention and Treatment (CTPT) Data Archive - a new archive of child trauma intervention studies.
Project leader: Nancy Kassam-Adams (US)
6. ADULT TRAUMA TREATMENT
Bringing data together to understand and improve trauma treatment
The global research consortium for Treating and Understanding Trauma Treatment Interventions (TUTTI) is bringing together individual-level data from multiple RCT’s of adult trauma treatment. The project will enable individual patient data (IPD) meta-analyses to improve detection of clinically relevant moderators of treatment effects and identify individual factors that influence PTSD treatment success.
Project leader: Simonne Wright (South Africa)
Team members: Marit Sijbrandij (Netherlands), Eirini Karyotaki (Netherlands), Soraya Seedat (South Africa), Pim Cuijpers (Netherlands), Jon Bisson (UK)
Creating an international veteran dataset to answer key questions in military mental health
A group of clinicians/researchers working in the area of Veteran mental health have joined together to form the International Veteran Dataset Initiative (IVDI), with the aim of creating an international veteran dataset to facilitate data analysis on a globally impactful level answering key internationally strategic questions within military mental health.
Team members: Cherie Armour (Northern Ireland), Neil Kitchener (Wales), Dominic Murphy (UK)
Read more about FAIR data and traumatic stress research
Kassam-Adams, N & Olff M (2020). Embracing data preservation, sharing, and re-use in traumatic stress research. European Journal of Psychotraumatology, 11 (1). https://doi.org/10.1080/20008198.2020.1739885
Sadeh, Y, Denejkina, A, Karyotaki, E, Lenferink, LIM, & Kassam-Adams, N. (2023). Opportunities for improving data sharing and FAIR data practices to advance global mental health. Cambridge Prisms: Global Mental Health, 10: e14. https://doi.org/10.1017/gmh.2023.7