Studies in Progress and Results

The purpose of this Master’s Thesis was to compare a Nintendo Wii intervention to a single-joint upper-limb resistance training of similar intensity for children with hemiplegic cerebral palsy aged seven to twelve and assess the impact each of these interventions had upon participants’ upper limb function, compliance and motivation levels.

Partner: University of Ontario Institute of Technology

Collaborators: Caroline Kassee, Meghann Lloyd, Carolyn Hunt

Type: Intervention

Status: Completed 2014-2015, published May 2017

The purpose of this project is to improve understanding of hemiplegic cerebral palsy (CP), including its etiology, and accelerate the development of new treatments.

Partner: Holland Bloorview Kids Rehabilitation Hospital, Ontario Brain Institute (OBI)

Collaborators: Darcy Fehlings and team

GCC Staff Involved: Carolyn Hunt, Angela Kielbowski

Type: Multi-faceted – Grandview is a recruiter site for the CPNET Clinical Database

Status: Completed, 2011-2018 – manuscript accepted for publication

Through this survey, researchers at the Ontario Brain Institute identified which questions stakeholders wanted to be answered about diagnosis, therapies, care, and other interventions for neurodevelopmental disorders. Individuals who have a neurodevelopmental disorder and those who care for or work with someone who does were asked to help set research priorities for neurodevelopmental research through online surveys.  The results were distilled into ten research priorities for neurodevelopmental disorders.

Partners: Ontario Brain Institute

Collaborators: Jessica Jordao

Type: Survey – Recruitment only

Status: Completed 2018 Video https://youtu.be/2wXOtpyObrY

The purpose of this study was to evaluate the longer-term effectiveness of spasticity interventions on gross motor function in young ambulatory children with spastic CP over a three-year period.  Secondary objectives include an evaluation of improved community mobility and participation in recreational activities.

Partner: Holland Bloorview Kids Rehabilitation Hospital, Hospital for Sick Children

Collaborators: Darcy Fehlings, Mark Mason

GCC Staff Involved: Carolyn Hunt, Jessica Todd, Cherie Kerr, Mark Mason, Grandview Children`s Centre Spasticity clinic

Type: Natural Cohort Clinical Trial

Status: Completed, 2010-2015, manuscript in progress

The purpose of this study was to build upon previous research. Hemiplegia is a subtype of cerebral palsy (CP) in which one side of the body is affected. Our earlier study of unselected children with CP demonstrated de novo and clinically relevant rare inherited genomic copy number variations (CNVs) in 9.6% of participants. In this study the prevalence and types of CNVs, specifically in hemiplegic CP were examined.

Partner: CPNET Project (HEMI)

Collaborators: Darcy Fehlings, Mehdi Zarrei and HEMI CPNET team

GCC Staff Involved: Carolyn Hunt

Type: Cross-sectional study with genotype analysis

Status: Published 2017

Publication

Zarrei, M., Fehlings, D. L., Mawjee, K., Switzer, L., Thiruvahindrapuram, B., Walker, S., et al. (2017). De novo and rare inherited copy number variations in the hemiplegic form of cerebral palsy, Genetics in Medicine,  DOI:10.1038/gim.2017.83

This was a chapter written for the textbook “A Comprehensive Guide to Intellectual & Developmental Disabilities, 2^nd edition”.

Partner: Holland Bloorview Kids’ Rehabilitation Hospital, CanChild

Collaborators: Darcy Fehlings, Peter Rosenbaum

GCC Staff Involved: Carolyn Hunt

Type: Book Chapter

Status: Published, 2017

Publication

Fehlings, D. & Hunt, C.  (2017). Cerebral Palsy. In M. L. Wehmeyer, I. Brown, M. Percy, K. Shogren, & W. L. A. Fung (Eds.), A Comprehensive Guide to Intellectual & Developmental Disabilities , 2^nd edition (pp. 263-271). Baltimore, MD: Brookes Publishing Co.

The purpose of this study was to investigate whether a one week multi-sport skills camp could improve fundamental motor skills, physical activity, adaptive behavior and physical self-perceptions of school-aged females with Autism Spectrum Disorder (ASD).

Partner: University of Ontario Institute of Technology

Collaborators: Meghann Lloyd, Lindsay Smith

GCC Staff Involved: Cathy Kelly

Type: Intervention

Status: Completed, 2014; Published 2017

Publication

Guest, L., Balogh, R., Dogra, S. & Lloyd, M.  (2017). Examining the impact of a multi-sport camp for girls ages 8-11 with autism spectrum disorder. Therapeutic Recreation Journal, LI(2),109-126. Doi: 10.18666/TRJ-2017-V51-I2-7383

The purpose of this research was to create and validate the Autism Classification of Social Functioning (ACSF) Scale.

Partner: CanChild

Collaborators: Peter Rosenbaum, Martha Cousins, Briano diRezze and team

GCC Staff Involved: Carolyn Hunt, Alishia Chamney

Type: Tool development and validation – recruitment only

Start: Completed, 2014-2016

This Master’s thesis seeks to identify the impact of gymnastics and fine motor skills intervention on the motor skills and balance of children aged 5-9 with Autism Spectrum Disorder.  Twelve participants will be randomly divided into two equal groups. One group will receive a gymnastics intervention and the other will receive a fine motor skills intervention for one hour per week for six weeks.

Partner: University of Ontario Institute of Technology

Collaborators: Shahrzad Pezhman, Meghann Lloyd

Type: Intervention – recruitment only

Status: Completed 2017

Presentation

University of Ontario Institute of Technology 3MT (Finalist) in June 2016

Researchers in this study investigated whether enhanced auditory short-term memory may contribute to the learning of novel word forms in children with Autism Spectrum Disorder. Additionally, they evaluated whether delayed but qualitatively normal, versus atypical, cognitive processes underlie non-word repetition in this population via a detailed error analysis

Partner: McGill University

Collaborators: Aparna Nadig

GCC Staff Involved: Anjali Mulligan

Type: Error Analysis

Status: Completed. Publication March 2017

Publication

Nadig, A.  & Mulligan, A.  (2017). Intact non-word repetition and similar error patterns in language-matched children with autism spectrum disorders: A pilot study.  Journal of Communication Disorders, 66(1), 13-21.

The CANS-ASP is used to both describe and measure outcomes of children and youth who are receiving service through the Durham Applied Behaviour Analysis (ABA)-based Services and Supports for Children and Youth with ASD. ¬¬

Partner: University of Ontario Institute of Technology

Collaborators: Meghann Lloyd, Victoria Pequegnat and team

GCC Staff Involved: Leslie Suite, Lorraine Sunstrum-Mann, Carolyn Hunt, Grandview Children’s Centre ABA program

 Type: Chart Review

Status: Complete 2018     

Presentation

Brown, L., Cashley, D., Lloyd, M., Palmer, B. & Suite, L.  (2014, November).  The Use of the Child and Adolescent Needs and Strengths – Autism Spectrum Profile (CANS-ASP) in Durham Applied Behaviour Analysis (ABA)-Based Services and Supports for Children and Youth with Autism Spectrum Disorder. Poster session presented at the 2014 Ontario Association of Children’s Rehabilitation Services Conference, Toronto, ON.

Researchers are trying to identify whether parent ratings with the ACSF:SC tool can help predict what children’s social communication abilities will be like as they grow older.

Partners: CanChild

            Collaborators: Dr. Briano di Rezze, Helena Viveiros, and team

            GCC Staff Involved: Angela Kielbowski

            Type: Algorithm Study

            Status: Completed.

The purpose of this research is to determine the natural course of fatigue in children and adolescents with CP.  The researchers are also seeking to understand the relationships between fatigue and functional abilities and capacity for overall participation in meaningful life roles.

Partners: University of Western Ontario

Collaborators:  Dr. Laura Brunton

Type: Survey – Recruitment only

Status: Completed.

This project aims at identifying the gaps and possible solutions in informing policy making to support the human rights of children with disabilities.  It is being run by a research team based at McGill University.

Partners: McGill University

Collaborators: Dr. Keiko Shikako-Thomas

Type: Online Questionnaire, Interview, Focus Group

Status: Completed.

This is a questionnaire and interview based study which seeks to understand how youth with disabilities ages 14-21 years feel about themselves as they grow and change over the course of a year.

Partners: Holland Bloorview Kids Rehabilitation Hospital and Holland Bloorview Research Institute

Collaborators: Dr. Gillian King, Dr. Amy McPherson & Alanna Rudzik

Type: Interview & Questionnaire – recruitment onlyStatus: Completed

The purpose of this research is to explore what expectations parents have for their own roles and the roles of service providers. Additionally, this research seeks to explain whether/how/why role expectations change over time. Finally, this research seeks to assess the capacity of rehabilitation settings to support diverse role expectations and recommend relational- and systems-level strategies for supporting this capacity.

Partner: Holland Bloorview Kids Rehabilitation Hospital and Holland Bloorview Research Institute

Collaborators: Eric Smart

Type: Interview with Narrative Analysis – Recruitment only

Status: Recruitment complete

This is an in-depth analysis comparing infant siblings of children with Autism Spectrum Disorder (ASD) to control infants. Assessments in this study include eye gaze data, interviews, and the ADOS for toddlers.  This study contributes to our understanding of the development of ASD in children.

Partner: University of Toronto

Collaborators: Bonnie McKinnon

Type: Clinical Trial – recruitment only

Status: Recruitment completed

This is a randomized double blind sham control trial comparing functional improvement in kids with hemiplegic cerebral palsy secondary to stroke who receive constraint therapy alone or constraint therapy plus transcranial magnetic stimulation

Partner: Holland Bloorview and University of Calgary

Collaborators: Darcy Fehlings and Adam Kirton

Type: Randomized Double Blind Controlled Trial – offsite

Status: Recruitment for Camp in 2018, 2019, recruitment completed

This is a qualitative and quantitative study designed to help better characterize the “female phenotype” of ASD.

Partner: CAMH

Collaborators: Meng-Chuan Lai, Caroline Kassee

Type: Qualitative and quantitative study to design a measure, Recruitment only

Status: Recruitment complete

Researchers are seeking to understand the experiences of African-Canadian immigrant parents who have a child with a developmental disability (e.g., autism spectrum disorder, Down syndrome, intellectual disability, genetic disorders) and the factors that are related to positive outcomes for these parents.

Partners: York University

Collaborators: Busi Ncube, Dr. Adrienne Perry

Type: Survey and Interview – Recruitment only

Status: Recruitment complete

The purpose of this pilot study is to assess the feasibility of conducting a multi-site five-week longitudinal cohort study of children and youth aged 8-18 years with CP. This pilot study is part of a larger study working to identify pain patters in children & youth with cerebral palsy.

Partners: Holland Bloorview Kids Rehabilitation Hospital

Collaborators: Heather Shearer, Dr. Darcy Fehlings

GCC Staff Involved: Angela Kielbowski

Type: Questionnaire

Status: Complete

The purpose of this project is to develop a design standard for Children/s Rehabilitation Treatment Centres.

Partners: OCAD University

Collaborators: Dr. Peter Coppin, Maya Desai, Pui Yee Nikki, Grace Mendez

Type: Focus Group

Status: Recruitment complete

This research study seeks to learn how physical activity based training (sports-skill and
strength training focusing on gait) impacts brain activity.  Researchers are also interested in determining if changes in movement and participation are linked to brain change. Researchers are recruiting 20 children ages 7-17 with hemiplegic cerebral palsy (GMFCS Level I – II) and 10 children with diplegic cerebral palsy (GMFCS Level I-II).

Partner: Holland Bloorview Kids Rehabilitation Hospital

Collaborators: Virginia Wright

GCC Staff Involved: Shannon Knights

Type: Intervention

Status: Completed 2016 – 2019

This research seeks to determine whether early behavioral signs of Autism Spectrum Disorder (ASD) can be observed in young infants. Researchers are investigating whether differences in certain body signals (such as temperature, heart rate, sweating) during a variety of tasks can be observed and if these signs are different in infants who go on to have ASD, compared to those who do not.

Partners: Holland Bloorview Kids Rehabilitation Hospital; Holland Bloorview Research Institute

Collaborators: Jessica Brian, Jessica Contini

Type: Longitudinal- Recruitment only

Status: Recruitment complete 2020

This is a three-year study on motor skills intervention for children with Autism Spectrum Disorder. The 12 – week intervention will be provided to 100 children aged 3yrs and older over the period of the study. The program is free to families and scheduled to start in October 2017. Additional information regarding the program will be provided to Durham partners to assist with recruitment.

Partners: University of Ontario Institute of Technology

Collaborators: Dr. Meghann Lloyd

Type: Intervention – Recruitment only

Status: Recruitment complete 2020

Researchers are investigating whether their employment intervention is useful for youth looking for jobs. They are comparing two different online employment programs—one with and the other without online peer mentoring.

Partners: Holland Bloorview Kids Rehabilitation Hospital; Bloorview Research Institute

Collaborators: Elaine Cagliostro, Dr. Sally Lindsay

Type: Online Focus Groups & Survey – Recruitment only

Status: Recruitment complete 2020.

The purpose of this research is to better understand the relationship between exercise and sleep in the ASD population. Researchers are wondering whether or not a 4-week exercise intervention has a positive influence on sleep behaviour in 8-10 year-old children with ASD compared to controls.  Additionally, they are testing if a visual perceived exertion scale is a feasible method to determining the intensity of exercise during an exercise intervention for children with ASD; and if an exercise intervention affects behavioral characteristics in children with ASD.

Partner: OntarioTech University

Collaborators: Dr. Meghann Lloyd and Tayler Runge

Type: Master’s Thesis – Intervention Study

Status: Recruitment Complete 2020

The purpose of this study is to develop greater understanding of the parasport participants’ perspectives on introductory parasport to provide key information and context that can help to guide the development of future projects and promote best outcomes.

Partner: OntarioTech University

Collaborators: Dr. Meghann Lloyd and Mikaeli Cavell

Type: Master’s Thesis – interview

Status: Recruitment complete 2020

The current phase of this study focuses on three main objectives: to determine test-retest reliability of the FAB-CP; to evaluate convergent construct validity of the FAB-CP in terms of the relationships with each of balance performance, advanced gross motor skills, PA enjoyment, and PA participation; and to assess discriminant validity in youth with CP using known group analysis to compare FAB-CP scores between Gross Motor Function Classification System (GMFCS) Levels I & II.

Partner: University of Toronto, Holland Bloorview Research Institute

Collaborators: Megan Towns, Virginia Wright

Type: Reliability Study

Status: Ongoing – December 2019 – Recruitment only

The objectives of this study are to determine whether an evidence-informed early motor skill intervention is effective at improving motor skills in 4-6-year-old children with ASD when implemented in a community-based recreation program; to explore whether social interactions increase and social, communication, and behavioural skills improve after a motor skill intervention in 4-6-year-old children with ASD; and to determine the efficacy and feasibility of a motor skill intervention for children with ASD when implemented by a community organization. It is anticipated that the results of this study will generate a much needed first step in establishing the efficacy of a cost-effective, age-appropriate, and family-centered intervention for young children with ASD. 

Partner: OntarioTech University

Collaborators: Dr. Meghann Lloyd

Type: Intervention Study

Status: Recruitment complete 2020.

The purpose of this research is to test the ACSF: SC-Integrated tool of social communication ability to see if it is a reliable measure of social communication for children between ages 2 to 21 with autism.

Partner: CanChild

Collaborators: Peter Rosenbaum, Briano diRezze and team

GCC Staff Involved: Angela Kielbowski

Type: Reliability Study

Status: Recruitment Complete 2020.