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The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.
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.
Afiliación
  • Kata A; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • McPhee PG; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Chen YJ; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Zwaigenbaum L; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Singal D; School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.
  • Roncadin C; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Bennett T; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Carter M; Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
  • Di Rezze B; Autism Alliance of Canada, Toronto, Ontario, Canada.
  • Drmic I; McMaster Children's Hospital Autism Program, Hamilton Health Sciences, Hamilton, Ontario, Canada.
  • Duku E; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Fournier S; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Frei J; Department of Genetics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Gentles SJ; School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.
  • Georgiades K; CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada.
  • Hanlon-Dearman A; McMaster Children's Hospital Autism Program, Hamilton Health Sciences, Hamilton, Ontario, Canada.
  • Hoult L; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Kelley E; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Koller J; Child and Community Resources, Sudbury, Ontario, Canada.
  • de Camargo OK; Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
  • Lai J; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Mahoney B; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Mesterman R; Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
  • Ng O; Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
  • Robertson S; Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada.
  • Rosenbaum P; McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • Salt M; Department of Psychology, Queen's University, Kingston, Ontario, Canada.
  • Zubairi MS; Department of Psychiatry, Queen's University, Kingston, Ontario, Canada.
  • Georgiades S; Seymour Fox School of Education, Hebrew University of Jerusalem, Jerusalem, Israel.
BMJ Open ; 14(4): e083045, 2024 Apr 29.
Article en En | MEDLINE | ID: mdl-38684247
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Proyectos de Investigación / Trastorno Autístico Límite: Child / Child, preschool / Female / Humans / Infant / Male País/Región como asunto: America do norte / Asia Idioma: En Revista: BMJ Open Año: 2024 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Proyectos de Investigación / Trastorno Autístico Límite: Child / Child, preschool / Female / Humans / Infant / Male País/Región como asunto: America do norte / Asia Idioma: En Revista: BMJ Open Año: 2024 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Reino Unido