Related Experiment Video
Updated: Jun 27, 2025
A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining
Anna Kata1,2, Patrick G McPhee1,2,3, Yun-Ju Chen1,2
1Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
Insights
This study tracks how young children with autism develop over time, identifying factors that influence their daily functioning and support better clinical care.
Area of Science:
- Developmental psychology
- Pediatric health services research
- Autism spectrum disorder research
Background:
- Autism's developmental variability complicates timely, individualized care.
- Stakeholder input emphasizes studying daily functioning and social determinants of health.
- Longitudinal research is crucial for understanding autism progression.
Purpose of the Study:
- To examine adaptive functioning trajectories in young children newly diagnosed with autism.
- To identify factors associated with these developmental trajectories.
- To inform clinical care and service provision for autistic children.
Main Methods:
- The Pediatric Autism Research Cohort (PARC) Study is a multi-site, patient-oriented longitudinal investigation.
- Recruiting 1300 children under 7 with recent autism diagnoses across Canada and Israel.
- Prospective follow-up to age 8 with 6-month assessments via an online portal.
Main Results:
- Longitudinal data will map adaptive functioning trajectories from diagnosis through school transition.
- Analysis will identify child, family, and service factors linked to heterogeneity in development.
- Focus on potential turning points during sensitive developmental periods.
Conclusions:
- The PARC Study will identify key factors influencing autism trajectories.
- Integrated knowledge translation with stakeholders ensures relevance to clinical practice.
- Findings will inform policy for provincial and national autism support programs.
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.
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:26Modeling in Therapy
Participant Modeling
Participant modeling involves therapists demonstrating calm and effective behaviors in...
02:20Longitudinal Research
01:26Longitudinal Studies