Development of an international data repository and research resource: the Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive

• Published in: European journal of psychotraumatology Vol. 11; no. 1; p. 1729025
• Main Authors: Kassam-Adams, Nancy, Kenardy, Justin A., Delahanty, Douglas L., Marsac, Meghan L., Meiser-Stedman, Richard, Nixon, Reginald D. V., Landolt, Markus A., Palmieri, Patrick A.
• Format: Journal Article
• Language: English
• Published: United States Taylor & Francis 31-12-2020; Taylor & Francis Ltd; Taylor & Francis Group
• Subjects: análisis integrado de información; Archives & records; Chi-square test; child and adolescent; Clinical; data sharing; Estrés traumático; FAIR data; FAIR数据; información FAIR; integrative data analysis; intercambio de datos; niños y adolescentes; Retention; The first 30 prospective studies (overall N=5499) contributing datasets to the PACT/R data archive were conducted by 15 research teams in 5 countries, enrolled children exposed to injury, disaster, violence, traffic accidents, or other acute events, and utilized 22 different measures of posttraumatic stress. Across all datasets, 80% of participants were retained for at least 2 assessments. Using harmonized cross-study data, 24% reported significant traumatic stress 1 month or more post-event.The PACT/R project demonstrates the feasibility and value of archiving and harmonizing traumatic stress research data from multiple studies and making these data available for re-use; Trauma; Traumatic stress; 儿童和青少年; 创伤应激; 数据共享; 综合数据分析; The first 30 prospective studies (overall N=5499) contributing datasets to the PACT/R data archive were conducted by 15 research teams in 5 countries, enrolled children exposed to injury, disaster, violence, traffic accidents, or other acute events, and utilized 22 different measures of posttraumatic stress.• Across all datasets, 80% of participants were retained for at least 2 assessments. Using harmonized cross-study data, 24% reported significant traumatic stress 1 month or more post-event.•The PACT/R project demonstrates the feasibility and value of archiving and harmonizing traumatic stress research data from multiple studies and making these data available for re-use; child and adolescent; integrative data analysis; FAIR data; Traumatic stress; data sharing
• ISSN: 2000-8066; 2000-8198; 2000-8066
• DOI: 10.1080/20008198.2020.1729025

Background: Studies that identify children after acute trauma and prospectively track risk/protective factors and trauma responses over time are resource-intensive; small sample sizes often limit power and generalizability. The Prospective studies of Acute Child Trauma and Recovery (PACT/R) Data Archive was created to facilitate more robust integrative cross-study data analyses.
Objectives: To (a) describe creation of this research resource, including harmonization of key variables; (b) describe key study- and participant-level variables; and (c) examine retention to follow-up across studies.
Methods: For the first 30 studies in the Archive, we described study-level (design factors, retention rates) and participant-level (demographic, event, traumatic stress) variables. We used Chi square or ANOVA to examine study- and participant-level variables potentially associated with retention.
Results: These 30 prospective studies (N per study = 50 to 568; overall N = 5499) conducted by 15 research teams in 5 countries enrolled children exposed to injury (46%), disaster (24%), violence (13%), traffic accidents (10%), or other acute events. Participants were school-age or adolescent (97%), 60% were male, and approximately half were of minority ethnicity. Using harmonized data from 22 measures, 24% reported significant traumatic stress ≥1 month post-event. Other commonly assessed outcomes included depression (19 studies), internalizing/externalizing symptoms (19), and parent mental health (19). Studies involved 2 to 5 research assessments; 80% of participants were retained for ≥2 assessments. At the study level, greater retention was associated with more planned assessments. At the participant level, adolescents, minority youth, and those of lower socioeconomic status had lower retention rates.
Conclusion: This project demonstrates the feasibility and value of bringing together traumatic stress research data and making it available for re-use. As an ongoing research resource, the Archive can promote 'FAIR' data practices and facilitate integrated analyses to advance understanding of child traumatic stress.