Collaborating to make traumatic
stress research data “FAIR”
Theme leader: Nancy Kassam-Adams
Data that are FAIR (Findable, Accessible, Inter-operable, and Re-usable) have greater impact, and help to accelerate science to benefit trauma-exposed individuals and communities around the world. See Kassam-Adams & Olff (2020).
Our projects aim to facilitate FAIR data practices across the research data lifecycle:
· 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 in their own work.
Join the GCTS FAIR Data Network to stay up to date with news, projects, and opportunities related to FAIR data in the traumatic stress field. Contact us at info@traumadata.org to join the network.
Why work to make our data more FAIR? Hear from researchers about their experiences, in these brief videos (~ 1 – 4 mins each):
FAIR DATA TOOLS & INFRASTRUCTURE PROJECTS
FINDABLE TRAUMA DATA – INDEX OF FAIR DATASETS & DATA RESOURCES
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. 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. Check out the FAIR Datasets index here.
How you can help:
(1) Join our team – contact project leaders to learn more.
(2) Send us your suggestions of FAIR data resources! Use this form to tell us about data resources we should know about.
Project leaders: Yaara Sadeh (Israel) & Anna Denejkina (Australia)
FAIR DATA TOOLKIT FOR TRAUMATIC STRESS RESEARCHERS
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 is bringing together existing resources, and creating new resources where needed, to provide an accessible FAIR data toolkit for traumatic stress researchers.
Project leader: Talya Greene (UK) & Bryce Hruska (US)
Workgroup: Matthew Price (US), Ateka Contractor (US), Chris Hoeboer (Netherlands)
Check out the FAIR toolkit here.
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. 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. Work in progress includes harmonization schemes for item-level / symptom-level data, for trauma exposure types, and for intervention components / practice elements.
Project leaders: Nancy Kassam-Adams (US) & Maya O’Neil (US)
INTEGRATIVE DATA PROJECTS
CHILD TRAUMA
Creating data resources to understand trauma responses, recovery, and interventions in children and adolescents
Child Trauma Data Archives (CTDA)
The Child Trauma Data Archives project brings together individual participant data from child trauma studies in a unique research resource and develops tools and methods to facilitate harmonization and re-use of these data. CTDA currently includes two archives: the Prospective studies of Acute Child Trauma & Recovery (PACT/R) Data Archive - with over 30 prospective (non-intervention) studies that followed children over time after exposure to an acute trauma, and the Child Trauma Prevention and Treatment (CTPT) Data Archive - a newer collection bringing together data from child trauma intervention studies examining prevention or treatment of mental health sequelae of any kind of trauma exposure. CTDA data are available upon request to researchers around the world.
Project leader: Nancy Kassam-Adams (US)
ADULT TRAUMA TREATMENT
Bringing data together to understand and improve trauma treatment in adults
Project Harmony
Project Harmony is integrating data from over 50 existing studies around the world on the treatment of posttraumatic stress disorder (PTSD) and comorbid alcohol and other drug disorders (AODs) in adults, including over 4,500 study participants. The overarching goal is to examine the relative efficacy of different PTSD/AOD treatments. Harmonizing this large body of research will create a usable tool for clinicians and researchers to better treat comorbid PTSD and AODs.
Project leaders: Denise Hien (US) and Antonio Morgan-López (US)
PTSD Trials Standardized Data Repository (PTSD Repository)
The PTSD Repository compiles study-level data on PTSD clinical trials with adults around the world. This unique repository is a comprehensive source of data from randomized controlled trials on PTSD treatments, including treatments of comorbid PTSD and substance use disorders. It allows users to identify studies based on sample or study characteristics (including risk of bias ratings) and provides information on a range of outcomes, including standardized effect sizes. Data are updated annually and are available for users to download for research.
Project leaders: Jessica Hamblen (US) and Maya O’Neil (US)
Treating and Understanding Trauma Treatment Interventions (TUTTI)
The TUTTI project is a global research consortium 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)
TRAUMATIC GRIEF
Bringing data together on grief after traumatic and nontraumatic loss
Measurements Archive of Reactions to Bereavement from Longitudinal European Studies (MARBLES)
The MARBLES project brings together data from 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, enabling analyses of large datasets of relatively rare cases. MARBLES aims to connect members of the international community involved in bereavement research and enable re-use of data by researchers across the globe, including researchers with less research-capacity.
Project leaders: Paul Boelen (Netherlands) and Lonneke Lenferink (Netherlands)
Individual patient data-archive for cognitive behavioral therapy for prolonged grief
This project harmonizes existing individual patient data from clinical trials investigating the effects of cognitive behavioral therapy for prolonged grief disorder. This data-archive makes it possible to examine individual differences in treatment response and predictors thereof. Ultimately, this archive aims to foster collaborations among grief researchers who aim to enhance our understanding on who will respond best to our best treatments.
Project leaders: Lonneke Lenferink (Netherlands) and T. Deniz Ergun (Netherlands)
Prolonged grief in daily life
This project is building a FAIR data-archive compiling existing prolonged grief data collected among bereaved people using experience sampling methodology. These intense longitudinal data may answer questions about moment-to-moment fluctuations in prolonged grief reactions and the circumstances that relate to these fluctuations. This archive will be available for researchers worldwide to contribute to or the utilize from. The aim is to foster collaborative advancements in the study of how grief unfolds in daily life.
Project leaders: Lonneke Lenferink (Netherlands) and Justina Pociūnaitė-Ott (Netherlands)
VETERANS
Creating integrated data resources to answer key questions in military mental health
International Veteran Dataset Initiative (IVDI)
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.
Project leader: Andrea Phelps (Australia) & Don Richardson (Canada)
Team members: Cherie Armour (Northern Ireland), Neil Kitchener (Wales), Dominic Murphy (UK)
TRAUMATIC BRAIN INJURY & TRAUMATIC STRESS
Creating resources to enable harmonization and re-use of data on traumatic brain injury and mental health
FITBIR: Accelerating Synthesis of TBI Research Using Novel Methods 2.0 (FAST-RUN 2.0)
Combining data to rapidly advance traumatic brain injury research
This project merges shared data from the US Federal Interagency
Traumatic Brain Injury Research (FITBIR) Informatics System, that would otherwise be difficult to compare across studies, into a large, accessible, meta-dataset. Outcomes related to TBI, mental health, cognitive functioning, and quality of life in adults are available. FITBIR users can download both the code used to harmonize studies and the meta-datasets for research purposes. Users can also view interactive, web-based data summaries of the harmonized data for key demographic and outcomes.
Project leader: Maya O’Neil (US)
Harmonizing Veteran Longitudinal Cohorts to Identify Prognostic Factors in Post-Traumatic Brain Health
This project is leveraging Veteran datasets to better understand traumatic brain injury outcomes. The project harmonizes two deeply characterized longitudinal datasets on Veteran TBI to elucidate key predictors and prospective trajectories. Variables include TBI injury characteristics, mental health outcomes, physiological and functional outcomes, biomarkers, and imaging data. When complete, the harmonized dataset of several thousand Veterans will be available to researchers.
Project leader(s): Maya O’Neil (US) (Linked project PIs: Lisa Brenner; Dave Cifu; Elisabeth Wilde)
SUICIDE PREVENTION
Advancing suicide prevention through combining study-level and individual participant-level data
Suicide Prevention Trials Database (SPTD)
The mission of the SPTD is to establish a publicly available and up-to-date database of study-level data from published trials of suicide prevention approaches for adults. The database is updated annually and may be used for future systematic reviews or clinical practice guidelines, for identifying research gaps, and as an information resource for clinicians, patients, policymakers, and family members. The harmonized dataset, as well as interactive data stories for key subgroups and outcomes, are publicly available online.
Project leader(s): Lauren Denneson (US) and Maya O’Neil (US)
Harmonizing Individual Participant Data from Suicide Prevention Trials to Advance Precision Medicine Approaches for Suicide Prevention
This project expands the Suicide Prevention Trials Database to include individual participant level data. The SPTD-Individual Participant Level Database (SPTD-I) is an individual participant level database of studies with adults, curated with the goal of advancing precision medicine for suicidality: i.e., what works best for whom? It combines existing Veteran and military datasets to address the question of what works best for whom for suicide prevention, using patient-level data harmonization. The final dataset will be able to be used to answer questions about how individual characteristics (e.g., identity factors, comorbidity) influence the effectiveness of suicide prevention efforts and can be used to tailor care to the individual. When complete, the final dataset will be available to VA and DoD users upon request with an approved data use agreement.
Project leader(s): Lauren Denneson (US) and Maya O’Neil (US)
CHECK OUT INTEGRATIVE PROJECTS BASED ON FAIR DATA BELOW
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Child trauma
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Adult trauma treatment
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Traumatic grief
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Veterans
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Traumatic brain injury
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Suicide prevention
Read more about FAIR data and traumatic stress research
Check out our Zotero library of FAIR data publications in the traumatic stress field.
Send suggestions for publications we have missed to info@traumadata.org .
Highlighted publications
Editorials & reviews
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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
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Olff, M., To share or not to share – 10 years of European Journal of Psychotraumatology (2020). European Journal of Psychotraumatology, 11, 2020, 1, https://doi.org/10.1080/20008198.2020.1844955
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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
International survey of current data practices amongst traumatic stress researchers
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Prakash, K, Kassam-Adams, N, Lenferink, L, & Greene, T. (2023). Data sharing and re-use in the traumatic stress field: An international survey of trauma researchers. European Journal of Psychotraumatology 14(2), 2254118. DOI: 10.1080/20008066.2023.2254118.
Data pooling / harmonization methods
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Kassam-Adams, N, Kenardy, JA, Delahanty, DL, Marsac, ML, Meiser-Stedman, R, Nixon, RDV, Landolt, MA, & Palmieri, PA. (2020). Development of an international data repository and research resource: The Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive. European Journal of Psychotraumatology, 11(1). DOI: 10.1080/20008198.2020.1729025
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McDaniel, HL, Saavedra, LM, Morgan-López, AA, Bradshaw, C, Lochman, JE, Kaihoi, CA, Powell, NP, Qu, L, & Yaros, AC. (2023) Harmonizing social, emotional, and behavioral constructs in prevention science: Digging into the weeds of aligning disparate measures. Prevention Science 24, 1581–1594. DOI: 10.1007/s11121-022-01467-0
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Qi, W, Ratanatharathorn, A, Gevonden, M, Bryant, R, Delahanty, D, Matsuoka, Y, Olff, M, deRoon-Cassini, T, Schnyder, U, Seedat, S, Laska, E, Kessler, R, Koenen, K, & Shalev, A. (2018). Application of data pooling to longitudinal studies of early post-traumatic stress disorder (PTSD): The International Consortium to Predict PTSD (ICPP) project. European Journal of Psychotraumatology, 9(1). DOI: 10.1080/20008198.2018.1476442