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

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Kata, A., McPhee, P. G., Chen, Y., Zwaigenbaum, L., Singal, D., Roncadin, C., Bennett, T., Carter, M., Di Rezze, B., Drmic, I., Duku, E., Fournier, S., Frei, J., Gentles, S. J., Georgiades, K., Hanlon-Dearman, A., Hoult, L., Kelley, E., Koller, J.,..., & Georgiades, S. (2024). The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism. BMJ Open, 14(4), e083045. https://doi.org/10.1136/bmjopen-2023-083045

Publication date: 1 Apr 2024 Added to AutiHub: 29 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
29
Publication authors identified as autistic
1 / 29 (3.4%)
  1. Anna Kata
  2. Patrick G. McPhee
  3. Yun‐Ju Chen
  4. Lonnie Zwaigenbaum
  5. Deepa Singal
  6. Caroline Roncadin
  7. Teresa Bennett
  8. Melissa Carter
  9. Briano Di Rezze
  10. Irene Drmic
  1. Eric Duku
  2. Sherry Fournier
  3. Julia Frei
  4. Stephen J. Gentles
  5. Kathy Georgiades
  6. Ana Hanlon-Dearman
  7. Lorraine Hoult
  8. Elizabeth Kelley
  9. Judah Koller
  10. Olaf Kraus de Camargo
  1. Jonathan Lai
  2. Bill Mahoney
  3. Ronit Mesterman
  4. Olivia Ng
  5. Sue Robertson
  6. Peter Rosenbaum
  7. Mackenzie Salt *
  8. Mohammad S Zubairi
  9. Stelios Georgiades

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.

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Cited references
65
With a DOI
61
Without a DOI, from raw bibliography text
4
3 / 65 (4.6%) cited references include at least one author identified as autistic.
References with data to complete
4 / 65 (6.2%)
References with detected author names
61 / 65 (93.8%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
4
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
362
From DOI or external metadata
362
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
165 / 362 (45.6%) names are linked to an author already present in AutiHub. 197 / 362 (54.4%) names are not yet linked.
Names linked to a person identified as autistic
4 / 362 (1.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 4 / 165 (2.4%). Distinct people identified as autistic: 4 / 230 (1.7%).
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