Pediatric Autism Research Cohort (PARC): Towards a Learning Autism System
Objectives: The Pediatric Autism Research Cohort (PARC) Project is a pilot study testing the implementation of a Learning Autism System. The specific objectives are to: a) embed a standardized longitudinal research protocol within the regional program (clinic) and recruit 100 consecutive preschool children with ASD as they enter the OAP; b) describe the developmental trajectories (clinical pathways) in preschool children with ASD – at the individual, subgroup, and group levels – and identify individual and contextual factors contributing to variability in outcomes; and c) through a digital platform, create a ‘feedback loop’ with the clinic to help disseminate research findings to families and clinicians, allowing for enhanced communication and decision-making processes leading to more tailored and adaptive service plans.
Methods: The pilot phase of PARC includes recruiting and assessing newly-diagnosed preschool children with ASD. Data are collected in two stages: 1) accessing information collected as part of ‘standard’ clinical practice, and 2) administering a set of additional assessments on child, family, services, and community level variables of interest. Stage 1 includes measures of symptom severity, cognitive functioning, and adaptive behavior; Stage 2 includes measures of social communication abilities, community participation, quality of life, service use, and sociodemographic characteristics. Assessments are repeated at 6-month intervals over a 2-year period and data are synthesized and ‘fed back’ to the clinic on an ongoing basis.
Results: This pilot study is active and data collection is ongoing. To date 94 children with ASD and their families have been enrolled (mean age 3.81 years, SD 0.846, 79% male) in 8 months, with a 95% recruitment rate. The results of three-way clustering methods consisting of variables and observations over time will be presented, identifying homogeneous groups of children to inform service planning and adaptation. The developmental trajectories of social communication abilities and adaptive functioning will be mapped using longitudinal mixed membership models.
Conclusions: PARC represents a new type of longitudinal investigation in ASD, illustrating the feasibility of consecutive sampling with implications for representativeness. Within a Learning Autism System framework, research and clinical data are systematically collected and synthesized to inform clinical care as children move through the OAP. Findings will be discussed within the context of pragmatic, sustainable research that guides clinical practice and lays the foundation for the evidence base needed to inform programs and policies at a systems level.