Developmental Trajectories in ASD Until Adulthood: A 15 Years Follow-up Study
Condition: Autism Spectrum Disorders
MeSH terms: Autism Spectrum Disorder
Study type: Interventional

Summary: 
      Epidemiological studies have shown that a wide range of outcome trajectories exist in ASD,
      but little is known about their determinant in a long-term perspective. The EpiTED cohort was
      set-up in order to understand the heterogeneity of developmental trajectories among children
      with a diagnosis of PDD and the role of clinical, biological and environmental factors in
      their adaptive outcome. It is one of the rare cohorts involving a long term prospective
      follow-up based on a large set of variables, and precise phenotypes of the entire autism
      spectrum.
    

Detailed description: 
      Purpose: Epidemiological studies have shown that a wide range of outcome trajectories exist
      in ASD, but little is known about their determinant in a long-term perspective. The EpiTED
      cohort was set-up in order to understand the heterogeneity of developmental trajectories
      among children with a diagnosis of PDD and the role of clinical, biological and environmental
      factors in their adaptive outcome. It is one of the rare cohorts involving a long term
      prospective follow-up based on a large set of variables, and precise phenotypes of the entire
      autism spectrum.

      Participants: This longitudinal study for which recruitment began between 1997 and 1999, has
      initially involved 281 preschool aged children recruited from 5 French areas. They were seen
      at 8 (Time 2), 15 (Time 3) and 20 years of age (Time 4), with an average follow-up length of
      15 years. At each follow-up, socio-demographical, clinical, developmental and interventional
      were collected. At Time 4 (fourth visit), DNA was collected to do a genetic study Findings to
      date: The main results show that there were two developmental trajectories from childhood to
      adolescence among the cohort leading to very distinct level of adaptive functioning.
      Prognosis factors in childhood were the intellectual level, the presence or absence of
      language, the autism degree and the absence or presence of epilepsy. During adolescence there
      was a negative impact on the quality of life of the parents of the presence of aberrant
      behavior and low level functioning, The children included in the cohort were followed during
      15 years and were assessed four times (at 5, 8, 15 and 20 years on average, see flow chart in
      figure 1. From 2000 to 2002, 219 of the original group were reassessed (time 2, T2). At time
      3 (T3), between 2007 and 2009, they were 152 to be re-assessed and 106 between 2012 and 2015
      (time 4, T4).
    

Intervention name(s): Vineland II (VABS -II); Quality of life
Intervention type(s): Other; Other
Intervention description(s): semi-structured interview with a psychologist; Measure 4 areas: Communication, skills of daily living, socialization and skills Motrices; Evaluation of the quality of life and comorbidities
Intervention model: Single Group Assignment
Masking: None (Open Label)
Keywords: Autism Spectrum Disorders; Cohort