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

IntroductionThe 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...

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Veröffentlicht in:	BMJ open 2024-04, Vol.14 (4), p.e083045
Hauptverfasser:	Kata, Anna, McPhee, Patrick G., Chen, Yun-Ju, Zwaigenbaum, Lonnie, Singal, Deepa, Roncadin, Caroline, Bennett, Teresa, Carter, Melissa, Di Rezze, Briano, Drmic, Irene, Duku, Eric, Fournier, Sherry, Frei, Julia, Gentles, Stephen J., Georgiades, Kathy, Hanlon-Dearman, Ana, Hoult, Lorraine, Kelley, Elizabeth, Koller, Judah, de Camargo, Olaf Kraus, Lai, Jonathan, Mahoney, Bill, Mesterman, Ronit, Ng, Olivia, Robertson, Sue, Rosenbaum, Peter, Salt, Mackenzie, Zubairi, Mohammad S, Georgiades, Stelios
Format:	Artikel
Sprache:	eng
Schlagworte:	Adaptation, Psychological Age Autistic children Autistic Disorder Canada Caregivers Child Child, Preschool Clinical medicine Cohort analysis Collaboration Communication Demographics developmental neurology & neurodisability Early intervention Feasibility studies Female Humans Infant Israel Longitudinal Studies Male Paediatrics patient participation Patient-centered care Pediatrics Prospective Studies Research Design Stakeholders
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Zusammenfassung:	IntroductionThe 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 (
ISSN:	2044-6055 2044-6055
DOI:	10.1136/bmjopen-2023-083045