Étude de cohorte de recherche pédiatrique sur l'autisme (PARC) : protocole d'une étude prospective orientée vers les patients examinant les trajectoires de fonctionnement chez les enfants autistes

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

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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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

Date de publication: 01/04/2024 Ajout dans AutiHub: 29/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
29
Auteur·ices de la publication identifié·es comme autistes
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

Résumé

Introduction La nature développementalement variable de l'autisme pose des difficultés pour fournir en temps opportun des services adaptés aux besoins d'un enfant. Malgré un intérêt récent pour la recherche longitudinale, des initiatives d'établissement des priorités menées avec des parties prenantes ont souligné l'importance d'étudier le fonctionnement quotidien d'un enfant et les déterminants sociaux de la santé afin d'éclairer les soins cliniques. Pour y répondre, nous menons une investigation longitudinale pragmatique, multisite et orientée vers les patients : l'étude de cohorte de recherche pédiatrique sur l'autisme (PARC). Chez de jeunes enfants (<7 ans) ayant récemment reçu un diagnostic d'autisme, nous allons : (1) examiner la variabilité des trajectoires du fonctionnement adaptatif depuis le moment du diagnostic jusqu'à la transition vers l'école ; et (2) identifier les facteurs associés aux trajectoires du fonctionnement adaptatif. Méthodes et analyse Nous visons à recruter 1 300 enfants de moins de 7 ans ayant reçu récemment (au cours des 12 derniers mois) un diagnostic d'autisme, provenant de sept sites : six au Canada ; un en Israël. Les participants seront suivis prospectivement depuis le diagnostic jusqu'à l'âge de 8 ans, avec des évaluations à intervalles de 6 mois. Les parents/aidants rempliront des questionnaires administrés par l'intermédiaire d'un portail de recherche en ligne personnalisé. Après chaque point temporel d'évaluation, les familles recevront un rapport récapitulatif de recherche décrivant les progrès de leur enfant en matière de fonctionnement adaptatif et de domaines connexes. L'analyse des données longitudinales permettra de cartographier les trajectoires et d'examiner les caractéristiques de l'enfant, de la famille et des services associées à la chronogénéité (hétérogénéité interindividuelle et intra-individuelle au fil du temps) ainsi que les éventuels points d'inflexion des trajectoires autour de périodes sensibles telles que la transition vers l'école. Éthique et diffusion Les approbations éthiques ont été obtenues sur tous les sites. Tous les parents/répondants fourniront un consentement éclairé lors de leur inscription à l'étude. En utilisant une approche intégrée de transfert des connaissances, dans laquelle les parties prenantes participent directement au processus de recherche, l'étude PARC identifiera les facteurs associés aux trajectoires de fonctionnement chez les enfants autistes. Les données probantes obtenues seront communiquées aux décideurs gouvernementaux afin d'éclairer les programmes provinciaux et nationaux. Les résultats seront diffusés lors de conférences et publiés dans des revues à comité de lecture.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 02/10/2026 01:40.

Références citées
65
Avec un DOI
61
Sans DOI, à partir du texte brut de la bibliographie
4
3 / 65 (4,6 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
4 / 65 (6,2 %)
Références avec noms d’auteurices détectés
61 / 65 (93,8 %)
Sans nom d’auteurice détecté
4
Sans titre structuré
4
Sans identifiant stable
4
Références avec noms bruts d’auteurices restant à vérifier
4
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
362
À partir du DOI ou de métadonnées externes
362
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
8
165 / 362 (45,6 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 197 / 362 (54,4 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
4 / 362 (1,1 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 4 / 165 (2,4 %). Personnes distinctes identifiées comme autistes : 4 / 230 (1,7 %).
  1. Neil Salkind (2010). Encyclopedia of Research Design . Encyclopedia of Research Design. SAGE Publications, Inc..
    Type: Autre DOI: 10.4135/9781412961288 OpenAlex: https://openalex.org/W597036898
    Crossref OpenAlex OpenCitations
  2. (s. d.). Palmeter S, O’Donnell S, Lagace C, et al. Autism Spectrum Disorder - Highlights from the 2019 Canadian Health Survey on Children and Youth. Ottawa: Publich Health Agency of Canada, 2021.
    Type: Autre
    Crossref
  3. Nicky Rogge , Juliette Janssen (2019). The Economic Costs of Autism Spectrum Disorder: A Literature Review . Journal of Autism and Developmental Disorders, 49(7), 2873-2900. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04014-z OpenAlex: https://openalex.org/W2938665791
    Crossref OpenAlex OpenCitations
  4. WENDY COSTER , GARY BEDELL , MARY LAW , MARY ALUNKAL KHETANI , RACHEL TEPLICKY , KENDRA LILJENQUIST et al. (2011). Psychometric evaluation of the Participation and Environment Measure for Children and Youth . Developmental Medicine & Child Neurology, 53(11), 1030-1037. Wiley.
    Type: Article DOI: 10.1111/j.1469-8749.2011.04094.x OpenAlex: https://openalex.org/W1505304836
    Crossref OpenAlex OpenCitations
  5. Tara A. Lavelle , Milton C. Weinstein , Joseph P. Newhouse , Kerim Münir , Karen A. Kuhlthau , Lisa A. Prosser (2014). Economic Burden of Childhood Autism Spectrum Disorders . Pediatrics, 133(3), e520-e529. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2013-0763 OpenAlex: https://openalex.org/W2120181870
    Crossref OpenAlex OpenCitations
  6. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Livre DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  7. Conrad V. Fernandez , Eric Kodish , Charles Weijer (2003). Informing Study Participants of Research Results: An Ethical Imperative . IRB: Ethics and Human Research, 25(3), 12. Wiley.
    Type: Article DOI: 10.2307/3564300 OpenAlex: https://openalex.org/W1551526306
    Crossref OpenAlex OpenCitations
  8. Alba DiCenso , Liz Bayley , R Brian Haynes (2009). Accessing pre-appraised evidence: fine-tuning the 5S model into a 6S model . Evidence Based Nursing, 12(4), 99.2-101. BMJ.
    Type: Article DOI: 10.1136/ebn.12.4.99-b OpenAlex: https://openalex.org/W2108973014
    Crossref OpenAlex OpenCitations
  9. Marsha Mailick Seltzer , Paul Shattuck , Leonard Abbeduto , Jan S. Greenberg (2004). Trajectory of development in adolescents and adults with autism . Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234-247. Wiley.
    Type: Article DOI: 10.1002/mrdd.20038 OpenAlex: https://openalex.org/W2168261450
    Crossref OpenAlex OpenCitations
  10. Cameron R. Pepperdine , Adam W. McCrimmon (2018). Test Review: Vineland Adaptive Behavior Scales, Third Edition (Vineland-3) by Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. Canadian Journal of School Psychology, 33(2), 157-163. SAGE Publications.
    Type: Article DOI: 10.1177/0829573517733845 OpenAlex: https://openalex.org/W2758378050
    Crossref OpenAlex OpenCitations
  11. Grace T. Baranek , Fabian J. David , Michele D. Poe , Wendy L. Stone , Linda R. Watson (2006). Sensory Experiences Questionnaire: discriminating sensory features in young children with autism, developmental delays, and typical development . Journal of Child Psychology and Psychiatry, 47(6), 591-601. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2005.01546.x OpenAlex: https://openalex.org/W1980426547
    Crossref OpenAlex OpenCitations
  12. Lonnie Zwaigenbaum , Melanie Penner (2018). Autism spectrum disorder: advances in diagnosis and evaluation . BMJ, 361, k1674. BMJ.
    Type: Article DOI: 10.1136/bmj.k1674 OpenAlex: https://openalex.org/W2804693820
    Crossref OpenAlex OpenCitations
  13. Lonnie Zwaigenbaum , Eric Duku , Éric Fombonne , Peter Szatmari , Isabel Smith , Susan E Bryson et al. (2019). Developmental functioning and symptom severity influence age of diagnosis in Canadian preschool children with autism . Paediatrics & Child Health, 24(1), e57-e65. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/pch/pxy076 OpenAlex: https://openalex.org/W2914831329
    Crossref OpenAlex OpenCitations
  14. Mary A. Khetani (2015). Validation of Environmental Content in the Young Children's Participation and Environment Measure . Archives of Physical Medicine and Rehabilitation, 96(2), 317-322. Elsevier BV.
    Type: Article DOI: 10.1016/j.apmr.2014.11.016 OpenAlex: https://openalex.org/W1986075301
    Crossref OpenAlex OpenCitations
  15. Patricia Howlin , Iliana Magiati (2017). Autism spectrum disorder . Current Opinion in Psychiatry, 30(2), 69-76. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/yco.0000000000000308 OpenAlex: https://openalex.org/W2569059432
    Crossref OpenAlex OpenCitations
  16. Ann H. Partridge (2002). Informing Clinical Trial Participants About Study Results . JAMA, 288(3), 363. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jama.288.3.363 OpenAlex: https://openalex.org/W2017274244
    Crossref OpenAlex OpenCitations
  17. Hilary E. Dingfelder , DAVID S. MANDELL (2011). Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory . Journal of Autism and Developmental Disorders, 41(5), 597-609. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-010-1081-0 OpenAlex: https://openalex.org/W2015312787
    Crossref OpenAlex OpenCitations
  18. Tony Charman (2018). Mapping Early Symptom Trajectories in Autism Spectrum Disorder: Lessons and Challenges for Clinical Practice and Science . Journal of the American Academy of Child & Adolescent Psychiatry, 57(11), 820-821. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2018.06.021 OpenAlex: https://openalex.org/W2898759506
    Crossref OpenAlex OpenCitations
  19. Pathways in ASD Study Team , Stelios Georgiades , Michael Boyle , Peter Szatmari , Steven Hanna , Eric Duku et al. (2014). Modeling the Phenotypic Architecture of Autism Symptoms from Time of Diagnosis to Age 6 . Journal of Autism and Developmental Disorders, 44(12), 3045-3055. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2167-x OpenAlex: https://openalex.org/W2015975017
    Crossref OpenAlex OpenCitations
  20. Stelios Georgiades , Somer Bishop , Thomas W Frazier (2017). Editorial Perspective: Longitudinal research in autism – introducing the concept of ‘chronogeneity’ . Journal of Child Psychology and Psychiatry, 58(5), 634-636. Wiley.
    Type: Article DOI: 10.1111/jcpp.12690 OpenAlex: https://openalex.org/W2605441208
    Crossref OpenAlex OpenCitations
  21. Amaria Baghdadli , Cécile Rattaz , Cécile Michelon , Eric Pernon , Kerim Münir (2019). Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort . Journal of Autism and Developmental Disorders, 49(6), 2243-2256. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03901-9 OpenAlex: https://openalex.org/W2914056900
    Crossref OpenAlex OpenCitations
  22. Catherine Lord , Somer Bishop (2015). Recent Advances in Autism Research as Reflected in DSM-5 Criteria for Autism Spectrum Disorder . Annual Review of Clinical Psychology, 11(1), 53-70. Annual Reviews.
    Type: Article DOI: 10.1146/annurev-clinpsy-032814-112745 OpenAlex: https://openalex.org/W2114737387
    Crossref OpenAlex OpenCitations
  23. Mary A. Khetani , James E. Graham , Patricia L. Davies , Mary C. Law , Rune J. Simeonsson (2015). Psychometric Properties of the Young Children's Participation and Environment Measure . Archives of Physical Medicine and Rehabilitation, 96(2), 307-316. Elsevier BV.
    Type: Article DOI: 10.1016/j.apmr.2014.09.031 OpenAlex: https://openalex.org/W2021406387
    Crossref OpenAlex
  24. Lucy A Livingston , Francesca Happé (2017). Conceptualising compensation in neurodevelopmental disorders: Reflections from autism spectrum disorder . Neuroscience & Biobehavioral Reviews, 80, 729-742. Elsevier BV.
    Type: Article DOI: 10.1016/j.neubiorev.2017.06.005 OpenAlex: https://openalex.org/W2714476989
    Crossref OpenAlex OpenCitations
  25. Lauren M. Little , Ashley C. Freuler , Marisa B. Houser , Lisa Guckian , Kristin Carbine , Fabian J. David et al. (2011). Psychometric Validation of the Sensory Experiences Questionnaire . American Journal of Occupational Therapy, 65(2), 207-210. SAGE Publications.
    Type: Article DOI: 10.5014/ajot.2011.000844 OpenAlex: https://openalex.org/W2021481215
    Crossref OpenAlex OpenCitations
  26. Michael Lombardo , Meng-Chuan Lai , Simon Baron-Cohen (2019). Big data approaches to decomposing heterogeneity across the autism spectrum . Molecular Psychiatry, 24(10), 1435-1450. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41380-018-0321-0 OpenAlex: https://openalex.org/W2951588804
    Crossref OpenAlex OpenCitations
  27. Mary A. Khetani , James E. Graham , Patricia L. Davies , Mary C. Law , Rune J. Simeonsson (2015). Psychometric Properties of the Young Children's Participation and Environment Measure . Archives of Physical Medicine and Rehabilitation, 96(2), 307-316. Elsevier BV.
    Type: Article DOI: 10.1016/j.apmr.2014.09.031 10.17615/zxw0-gw42
    OpenCitations
  28. Mubashir Arain , Michael J Campbell , Cindy L Cooper , Gillian A Lancaster (2010). What is a pilot or feasibility study? A review of current practice and editorial policy . BMC Medical Research Methodology, 10(1), 67-67. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1471-2288-10-67 OpenAlex: https://openalex.org/W2023008186
    OpenAlex
  30. Ian Ford , John Norrie (2016). Pragmatic Trials . New England Journal of Medicine, 375(5), 454-463. Massachusetts Medical Society.
    Type: Article DOI: 10.1056/nejmra1510059 OpenAlex: https://openalex.org/W4205374244
    Crossref OpenAlex OpenCitations
  31. Theresa Weldring , Sheree M.S. Smith (2013). Article commentary: patient-reported outcomes (pros) and patient-reported outcome measures (PROMs) . Health Serv Insights, 6, 61. SAGE Publications.
    Type: Article DOI: 10.4137/hsi.s11093 OpenAlex: https://openalex.org/W2028398671
    Crossref OpenAlex
  32. Richard Pender , Pasco Fearon , Jon Heron , Will Mandy (2020). The longitudinal heterogeneity of autistic traits: A systematic review . Research in Autism Spectrum Disorders, 79, 101671. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101671 OpenAlex: https://openalex.org/W3093579293
    Crossref OpenAlex OpenCitations
  33. Amaria Baghdadli , Brigitte Assouline , Sandrine Sonié , Eric Pernon , Céline Darrou , Cécile Michelon et al. (2012). Developmental Trajectories of Adaptive Behaviors from Early Childhood to Adolescence in a Cohort of 152 Children with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 42(7), 1314-1325. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-011-1357-z OpenAlex: https://openalex.org/W2036284160
    Crossref OpenAlex OpenCitations
  34. Stelios Georgiades , CONNIE KASARI (2018). Reframing Optimal Outcomes in Autism . JAMA Pediatrics, 172(8), 716. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2018.1016 OpenAlex: https://openalex.org/W2810066762
    Crossref OpenAlex OpenCitations
  35. Amy L. Whitehead , Benjamin G.O. Sully , Michael J. Campbell (2014). Pilot and feasibility studies: Is there a difference from each other and from a randomised controlled trial? Contemporary Clinical Trials, 38(1), 130-133. Elsevier BV.
    Type: Article DOI: 10.1016/j.cct.2014.04.001 OpenAlex: https://openalex.org/W2046632188
    Crossref OpenAlex OpenCitations
  37. P SCHULTE (1991). Ethical issues in the communication of results . Journal of Clinical Epidemiology, 44, 57-61. Elsevier BV.
    Type: Article DOI: 10.1016/0895-4356(91)90176-a OpenAlex: https://openalex.org/W2083922207
    Crossref OpenAlex OpenCitations
  38. Jerome Bickenbach , Sara Rubinelli , Cristiana Baffone , Gerold Stucki (2023). The human functioning revolution: implications for health systems and sciences . Frontiers in Science, 1. Frontiers Media SA.
    Type: Article DOI: 10.3389/fsci.2023.1118512 OpenAlex: https://openalex.org/W4378908955
    Crossref OpenAlex OpenCitations
  39. Amaria Baghdadli , Cécile Michelon , Eric Pernon , Marie‐Christine Picot , Stéphanie Miot , Sandrine Sonié et al. (2018). Adaptive trajectories and early risk factors in the autism spectrum: A 15‐year prospective study . Autism Research, 11(11), 1455-1467. Wiley.
    Type: Article DOI: 10.1002/aur.2022 OpenAlex: https://openalex.org/W2895008015
    Crossref OpenAlex OpenCitations
  40. Stephen M. Kanne , Micah Mazurek , Darryn Sikora , Jayne Bellando , Lee Branum-Martin , Benjamin Handen et al. (2014). The Autism Impact Measure (AIM): Initial Development of a New Tool for Treatment Outcome Measurement . Journal of Autism and Developmental Disorders, 44(1), 168-179. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-013-1862-3 OpenAlex: https://openalex.org/W2085899173
    Crossref OpenAlex OpenCitations
  41. Stephen J. Gentles , Elise C Ng-Cordell , Michelle C Hunsche , Alana J. McVey , E Dimitra Bednar , Michael G DeGroote et al. (2024). Trajectory research in children with an autism diagnosis: A scoping review . Autism, 28(3), 540-564. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231170280 OpenAlex: https://openalex.org/W4376871022
    Crossref OpenAlex OpenCitations
  42. Rackeb Tesfaye , Valerie Courchesne , Afiqah Yusuf , Tal Savion-Lemieux , Ilina Singh , Keiko Shikako-Thomas et al. (2019). Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities . Autism, 23(8), 1882-1896. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319831487 OpenAlex: https://openalex.org/W2924684014
    Crossref OpenAlex OpenCitations
  44. Lehana Thabane , Jinhui Ma , Rong Chu , Ji Cheng , Afisi Ismaila , Lorena P Rios et al. (2010). A tutorial on pilot studies: the what, why and how . BMC Medical Research Methodology, 10(1), 1-1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1471-2288-10-1 OpenAlex: https://openalex.org/W2170182466
    Crossref OpenAlex OpenCitations
  45. Peter Szatmari , Stelios Georgiades , Eric Duku , Teresa Bennett , Susan Bryson , Éric Fombonne et al. (2015). Developmental Trajectories of Symptom Severity and Adaptive Functioning in an Inception Cohort of Preschool Children With Autism Spectrum Disorder . JAMA Psychiatry, 72(3), 276. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapsychiatry.2014.2463 OpenAlex: https://openalex.org/W2120646369
    Crossref OpenAlex OpenCitations
  46. Nikolaos A. Patsopoulos (2011). A pragmatic view on pragmatic trials . Dialogues in Clinical Neuroscience, 13(2), 217-224. Informa UK Limited.
    Type: Article DOI: 10.31887/dcns.2011.13.2/npatsopoulos OpenAlex: https://openalex.org/W4295612440
    Crossref OpenAlex OpenCitations
  47. Amy M Daniels , DAVID S. MANDELL (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review . Autism, 18(5), 583-597. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313480277 OpenAlex: https://openalex.org/W2129844670
    Crossref OpenAlex OpenCitations
  48. Yun‐Ju Chen , Eric Duku , Stelios Georgiades (2022). Rethinking Autism Intervention Science: A Dynamic Perspective . Frontiers in Psychiatry, 13, 827406-827406. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyt.2022.827406 OpenAlex: https://openalex.org/W4214486518
    Crossref OpenAlex OpenCitations
  49. Briano Di Rezze , Peter Rosenbaum , Lonnie Zwaigenbaum , Mary Jo Cooley Hidecker , Paul Stratford , Martha Cousins et al. (2016). Developing a classification system of social communication functioning of preschool children with autism spectrum disorder . Developmental Medicine & Child Neurology, 58(9), 942-948. Wiley.
    Type: Article DOI: 10.1111/dmcn.13152 OpenAlex: https://openalex.org/W2405741367
    Crossref OpenAlex OpenCitations
  50. Briano Di Rezze , Stephen J. Gentles , Mary Jo Cooley Hidecker , Lonnie Zwaigenbaum , Peter Rosenbaum , Eric Duku et al. (2022). Adaptation, Content Validity and Reliability of the Autism Classification System of Functioning for Social Communication: From Toddlerhood to Adolescent-Aged Children with Autism . Journal of Autism and Developmental Disorders, 52(12), 5150-5161. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05621-z OpenAlex: https://openalex.org/W4282919672
    Crossref OpenAlex OpenCitations
  51. Kathy Leadbitter , Kathy Leadbitter , Helen McConachie , Helen McConachie , Ann Le Couteur , Tony Charman et al. (2018). The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention . Journal of Autism and Developmental Disorders, 48(4), 1052-1062. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3350-7 OpenAlex: https://openalex.org/W2767995481
    Crossref OpenAlex OpenCitations
  52. Richard Houghton , Brigitta Monz , Kiely Law , Georg Loss , Stephanie Le Scouiller , Frank de Vries et al. (2019). Psychometric Validation of the Autism Impact Measure (AIM) . Journal of Autism and Developmental Disorders, 49(6), 2559-2570. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04011-2 OpenAlex: https://openalex.org/W2937784115
    Crossref OpenAlex OpenCitations
  53. Diana Tajik-Parvinchi , Peter Rosenbaum , Mary Jo Cooley Hidecker , Eric Duku , Lonnie Zwaigenbaum , Caroline Roncadin et al. (2023). Construct Validity of the Autism Classification System of Functioning: Social Communication (ACSF:SC) Across Childhood and Adolescence . Journal of Autism and Developmental Disorders, 53(8), 3246-3256. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05608-w OpenAlex: https://openalex.org/W4281782238
    Crossref OpenAlex OpenCitations
  54. Daniel McNeish , Tyler Matta (2018). Differentiating between mixed-effects and latent-curve approaches to growth modeling . Behavior Research Methods, 50(4), 1398-1414. Springer Science and Business Media LLC.
    Type: Article DOI: 10.3758/s13428-017-0976-5 OpenAlex: https://openalex.org/W2765527842
    Crossref OpenAlex OpenCitations
  55. (s. d.). Lumedi. First release: 2019. copyright year 2019. Hamilton, Ontario, Canada. Version: January 2021, Available: https://lumedi.org/
    Type: Autre
    Crossref
  56. Sue Fletcher-Watson , Kenneth Larsen , Erica Salomone , Members of the COST ESSEA Working Groups (2019). What do parents of children with autism expect from participation in research? A community survey about early autism studies . Autism, 23(1), 175-186. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317728436 OpenAlex: https://openalex.org/W2767510311
    Crossref OpenAlex OpenCitations
  57. Wendy J. Ungar , Kate Tsiplova , Noreen Millar , Isabel Smith (2018). Development of the Resource Use Questionnaire (RUQ–P) for Families With Preschool Children With Neurodevelopmental Disorders: Validation in Children With Autism Spectrum Disorder . Clinical Practice in Pediatric Psychology, 6(2), 164-178. SAGE Publications.
    Type: Article DOI: 10.1037/cpp0000226 OpenAlex: https://openalex.org/W2806145477
    Crossref OpenAlex OpenCitations
  58. (s. d.). Sparrow S, Cicchetti D, Balla D. Vineland Adaptive Behavior Scales Third Edition (Vineland-3). San Antonio, TX: Pearson, 2016.
    Type: Autre
    Crossref
  59. Kamal Gholipour , Akbar Ghiasi , Hassan Shahrokhi , Zeinab Dadashi , Simin Javanmard , Seyyed Hasan Tabatabaei et al. (2023). Perceptions of the Professionals and Parents of Children with Autism Spectrum Disorders About Autism Services; A Qualitative Study . Journal of Autism and Developmental Disorders, 53(1), 96-109. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05388-9 OpenAlex: https://openalex.org/W4205956187
    Crossref OpenAlex OpenCitations
  60. Cristan Farmer , Lauren Swineford , Susan E. Swedo , Audrey Thurm (2018). Classifying and characterizing the development of adaptive behavior in a naturalistic longitudinal study of young children with autism . Journal of Neurodevelopmental Disorders, 10(1), 1-1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s11689-017-9222-9 OpenAlex: https://openalex.org/W2782503203
    OpenAlex
  61. Cynthia E. Rogers , Rachel E. Lean , Muriah D. Wheelock , Christopher D. Smyser (2018). Aberrant structural and functional connectivity and neurodevelopmental impairment in preterm children . Journal of Neurodevelopmental Disorders, 10(1), 38-38. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s11689-018-9253-x OpenAlex: https://openalex.org/W2904987420
    Crossref OpenAlex OpenCitations
  62. Stelios Georgiades , Peter A. Tait , Paul D. McNicholas , Eric Duku , Lonnie Zwaigenbaum , Isabel Smith et al. (2022). Trajectories of Symptom Severity in Children with Autism: Variability and Turning Points through the Transition to School . Journal of Autism and Developmental Disorders, 52(1), 392-401. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-04949-2 OpenAlex: https://openalex.org/W3134367224
    Crossref OpenAlex OpenCitations
  63. Luc Lecavalier , James Bodfish , Clare Harrop , Allison Whitten , Desiree R Jones , Jill Pritchett et al. (2020). Development of the Behavioral Inflexibility Scale for Children with Autism Spectrum Disorder and Other Developmental Disabilities . Autism Research, 13(3), 489-499. Wiley.
    Type: Article DOI: 10.1002/aur.2257 OpenAlex: https://openalex.org/W2999292707
    Crossref OpenAlex OpenCitations
  64. Pathways in ASD Study Team , Briano Di Rezze , Eric Duku , Peter Szatmari , J. Volden , Stelios Georgiades et al. (2019). Examining Trajectories of Daily Living Skills over the Preschool Years for Children with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 49(11), 4390-4399. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04150-6 OpenAlex: https://openalex.org/W2966484522
    Crossref OpenAlex OpenCitations
  65. (s. d.). Statistics Canada. Canadian Health Survey on Children and Youth (CHSCY), 2023. Available: https://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&Id=1504253 [Accessed 1 Dec 2023].
    Type: Autre
    Crossref