Investigating the natural history and prognostic factors of ASD in children: the multicEntric Longitudinal study of childrEN with ASD - the ELENA study protocol

Abstract

IntroductionThere is global concern about the increasing prevalence of autism spectrum disorders (ASDs), which are early-onset and long-lasting disorders. Although ASDs are considered to comprise a unique syndrome, their clinical presentation and outcome vary widely. Large-scale and long-term cohort studies of well-phenotyped samples are needed to better understand the course of ASDs and their determinants. The primary objective of the multicEntric Longitudinal study of childrEN with ASD (ELENA) study is to understand the natural history of ASD in children and identify the risk and prognostic factors that affect their health and development.Methods and analysisThis is a multicentric, longitudinal, prospective, observational cohort in which 1000 children with ASD diagnosed between 2 and 16 years of age will be recruited by 2020 and followed over 6 years. The baseline follow-up starts with the clinical examination to establish the ASD diagnosis. A battery of clinical tools consisting of the Autism Diagnostic Observation Schedule, the revised version of the Autism Diagnostic Interview, measures of intellectual functioning, as well as large-scale behavioural and developmental measurements will allow us to study the heterogeneity of the clinical presentation of ASD subtypes. Subsequent follow-up at 18 months and at 3, 4.5 and 6 years after the baseline examination will allow us to explore the developmental trajectories and variables associated with the severity of ASD. In addition to the children’s clinical and developmental examinations, parents are invited to complete self-reported questionnaires concerning perinatal and early postnatal history, congenital anomalies, genetic factors, lifestyle factors, medical and psychiatric comorbidities, and the socioeconomic environment. As of 1 November 2018, a total of 766 participants have been included.Ethics and disseminationEthical approval was obtained through the Marseille Mediterranean Ethics Committee (ID RCB: 2014-A01423-44), France. We aim to disseminate the findings through national and international conferences, international peer-reviewed journals, and social media.Trial registration numberNCT02625116; Pre-results.

Impact of containment and mitigation measures on children and youth with ASD during the COVID-19 pandemic: Report from the ELENA cohort

“…The ELENA cohort is a French prospective and multi-center study of ASD subjects ascertained between ages 2-16 years in which patients are followed for a period of 6 years. By collecting clinical, social, environmental, and genetic data, as well as data relating to the parental quality of life, the main objectives of the ELENA cohort are (i) to identify patterns in outcome trajectories for a large sample of children and adolescents with ASD, (ii) to examine determinants of these outcome trajectories at different follow-up stages, and (iii) to constitute an open French database on ASD that promotes collaboration in translational studies ( Baghdadli et al, 2019 ; Rattaz et al, 2020 ). Complete details of the protocol have been published in detail elsewhere ( Baghdadli et al, 2019 ).…”

WISC‐V Profiles and Their Correlates in Children with Autism Spectrum Disorder without Intellectual Developmental Disorder: Report from the ELENA Cohort

“…Participants were recruited from the ELENA cohort, a large multi‐center, longitudinal, prospective cohort of children with an ascertained ASD [Baghdadli et al, 2019]. Participants were recruited from 15 centers across nine of the 18 French regions.…”

“…We aimed to assess WISC‐V intellectual functioning in children with ASD without IDD and to explore the associations between WISC‐V profiles, ASD symptom severity, and adaptive functioning. Indeed, only a limited number of studies have investigated the intellectual profiles of children with ASD without IDD [Baghdadli et al, 2019; Joseph, Steele, Meyer, & Tager‐Flusberg, 2005]. Moreover, there are currently few studies that used WISC‐V to study the intellectual functioning of children with ASD without IDD.…”

Varying modalities of perinatal exposure to a pesticide cocktail elicit neurological adaptations in mice and zebrafish

“…Epidemiological evidence traces a link between presence of environmental contaminants and a risk for the development of central nervous system (CNS) negative trajectories (Baghdadli et al, 2019;Bouchard et al, 2011;Coker et al, 2017;De Felice et al, 2016;Engel et al, 2016;Eskenazi et al, 2004;Matsuki et al, 2020;Philippat et al, 2018Philippat et al, , 2017Rauh et al, 2011;Ricceri et al, 2006;Roberts et al, 2019;Sagiv et al, 2019;Von Ehrenstein et al, 2019). Considering the existence of pesticides in agricultural crops and in environmental matrices such as water, investigating the impact of contaminants on brain functions is relevant to public health and ecotoxicology.…”