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

Abstract

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 postevent. 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.

Associations between parent posttraumatic stress symptoms (PTSS) and later child PTSS: Results from an international data archive

“…Data from parent‐reported ratings of child PTSS were excluded because of concerns regarding the reliability of parent‐reported child PTSS (Meiser‐Stedman et al., 2007; Salloum et al., 2015). The Institutional Review Board of The Children's Hospital of Philadelphia, the PACT/R archive's institutional home, determined that analyses using PACT/R data do not constitute human‐subjects research because all included data are deidentified (Kassam‐Adams et al., 2020); therefore, regulatory approval was not obtained for the present study.…”

“…This study used data obtained from the Prospective studies of Acute Child Trauma and Recovery (PACT/R) data archive (http://www.childtraumadata.org), an international data repository of prospective studies on child traumatic stress (see Kassam‐Adams et al., 2020). Requirements for inclusion in the PACT/R data archive consist of, at the study level, (a) a sample that includes youth exposed to a PTE; (b) prospective data collection; and (c) data collection that occurs at least two time points, with the first occurring within 6 months of PTE exposure.…”

Sex differences in the severity and natural recovery of child PTSD symptoms: a longitudinal analysis of children exposed to acute trauma

“…Longitudinal data of child PTSD scores were provided by the international data archive for The Prospective studies of Acute Child Trauma and Recovery (PACT/R) -for a description of the archive see Kassam-Adams et al (2020). The archive comprises 32 longitudinal studies across five countries, featuring over 5,500 children that have experienced trauma such as injury, acute illness, RTA, or interpersonal violence.…”

Applications of agent-based modeling in trauma research.

“…Many studies in the field of trauma and violence are based on small samples, including selected clinical populations and trauma survivors, while population-based studies (e.g., in the wake of mass disasters) may be cross-sectional in nature, based on convenience samples, or lacking pretrauma assessments, and thus do not contain the level of detailed data needed to understand population-level patterns over time (Kassam-Adams et al, 2020; Norris, 2006). International efforts to promote data sharing, harmonization, and triangulation in trauma research and related fields (Campbell et al, 2020; Kassam-Adams et al, 2020; Price et al, 2018) may eventually result in more widespread availability of appropriate data sources for ABM development and validation. Moreover, one benefit of ABM is to identify input parameters that are particularly sensitive and generate significant model uncertainty, which could then guide empirical efforts to estimate these values more precisely and/or in different study populations.…”