Research Coordinator
BA Psych (Hons) MA Psych
Amy began working in the field of child development and disability in 2006. Before joining the Telethon Kids Institute, Amy’s past work experiences included her role as a Clinical Research Associate for the Autism Research Centre at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. It was there that Amy coordinated clinical trial studies that investigated targeted treatments for the core symptoms of autism spectrum disorders in children and adolescents.
Amy currently coordinates processes for several international and longitudinal rare disorder databases involving Rett syndrome, MECP2 Duplication, and CDKL5 disorder. She also manages a study that is developing and evaluating a new quality of life measure for children with intellectual disabilities across four diagnostic groups (Autism spectrum disorder, Cerebral palsy, Down syndrome, and Rett syndrome).
Amy’s continued interests include exploring diverse diagnostic, treatment and intervention options for individuals with intellectual disabilities.
View Amy's publications here.
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Publications
October 2019
Content validation of the Quality of Life Inventory—Disability
Satisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected
Published research Academic Biostatistics Child Disability Autism ResearchMarch 2019Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure
Initial evaluation suggests that QI-Disability is a reliable and valid measure of quality of life across the spectrum of intellectual disability
Published research Child Disability Autism ResearchFebruary 2019A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder
This study aimed to identify the quality of life domains important for individuals with CDKL5 deficiency disorder
Published research Child DisabilityJanuary 2019Parent-observed thematic data on quality of life in children with autism spectrum disorder
Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder
Autism Spectrum Disorders Published research Child Disability Autism ResearchJanuary 2018The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis
Mental health conditions and problems are often reported in children and adolescents with CP. A systematic review was undertaken to describe their prevalence.
Published research Health Promotion & Education Child Disability Autism ResearchNovember 2017Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?
An estimated half of all children with cerebral palsy also have comorbid intellectual disability, the domains of QOL for these children are not well understood
Cerebral Palsy Published research Intellectual Disability Autism ResearchApril 2017Autonomic breathing abnormalities in Rett syndrome: caregiver perspectives in an international database study
Our aims were to characterize the abnormal breathing patterns and abdominal bloating, investigate the distribution of these by age and mutation type and examine their impact and management from a caregiver perspective.
Published research Health Promotion & Education Rett Syndrome Child DisabilityFebruary 2017Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome
We investigated parental observations to identify QOL domains in children with Down Syndrome and determined whether domains differed between children and teens.
Published research Child DisabilitySeptember 2016Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype
Prevalence and determinants of sleep problems in Rett syndrome
Published research Rett Syndrome Child DisabilityMay 2016Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndrome
There were differences in the presentation of clinical features occurring in the CDKL5 disorder and in Rett syndrome.
Published research Rett Syndrome Child DisabilityMarch 2016Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods
Existing quality of life scales for children in the general population or with other disabilities did not capture the QOL of children with Rett syndrome
Published research Rett Syndrome Child Disability Autism Research -
Education and Qualifications