The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism

Anna Kata, Patrick G. McPhee, Yun Ju Chen, Lonnie Zwaigenbaum, Deepa Singal, Caroline Roncadin, Teresa Bennett, Melissa Carter, Briano Di Rezze, Irene Drmic, Eric Duku, Sherry Fournier, Julia Frei, Stephen J. Gentles, Kathy Georgiades, Ana Hanlon-Dearman, Lorraine Hoult, Elizabeth Kelley, Judah Koller, Olaf Kraus de CamargoJonathan Lai, Bill Mahoney, Ronit Mesterman, Olivia Ng, Sue Robertson, Peter Rosenbaum, Mackenzie Salt, Mohammad S. Zubairi, Stelios Georgiades

Research output: Contribution to journalArticlepeer-review

Abstract

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Original languageAmerican English
Pages (from-to)e083045
JournalBMJ Open
Volume14
Issue number4
DOIs
StatePublished - 29 Apr 2024

Bibliographical note

Publisher Copyright:
© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Keywords

  • developmental neurology & neurodisability
  • patient participation
  • patient-centered care

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