Clinical/Research Study Opportunities

“Navigating the Medical and Social Merry-Go-Round”: Understanding the Caregiving Experiences of Parents of Visible Minorities that Care for Children Living with Autism Spectrum Disorder (ASD)

Are you a parent who identifies as a visible minority, caring for a child with autism? If so, do you want to participate in a study about your caregiving experiences? What is this study about: The HEART Lab at Holland Bloorview is conducting a study to understand the caregiving experiences of parents of visible minorities who care for a child with autism. In the study, you will be asked to discuss your caregiving experiences in which we will explore topics such as cultural stigma. In this study you will also participate in an art activity in which you can express your experiences.

Partner:  Holland Bloorview Kids’ Rehabilitation Hospital

Collaborators: Dr. Fiona Moola, Nivatha Moothathamby, Methuna Naganathan

Type: Interview, Activity

Status:

October 2019 – March 2021
October 2019 – January 2021 – Study advertisement & Recruitment

Documents:

• ASD Study – Study Approval
• Appendix 1 – Study Protocol
• Appendix 7 – Information Flyer
• Appendix 8 – Recruitment Script
• GrandviewKids Application for Approval of a Research Study 2020

This interview-based study will seek to answer the following questions: what type of experiences do parents/caregivers and their children living with ASD have when engaging in aquatic environments?; and does engaging, or not engaging, in specialized aquatic therapy programs have any effect on the type of experiences parents/caregivers and their children living with ASD have around aquatic environments?

Partner:  Ontario Tech University

Collaborators: Dr. Serene Kerpan, Larissa Lobo

Type: Interview

Status: Recruitment  – October 2020

The ACSF:SC (Integrated) is currently being tested for its consistency in use by parents and clinicians. This study will test the accuracy of the ACSF:SC (Integrated) by comparing it to other measures of social communication across the age range. These tests will provide assurance that the ACSF:SC (Integrated) examines the concept of everyday social communication abilities with children 2-18 years of age. The ACSF:SC provides a common language for parents and clinicians to describe the social communication abilities of the children, which will enable them to discuss the potential factors that may impact a child’s abilities. This measure will also enable research into the developmental patterns of children with autism.

Partner:  CanChild

Collaborators: Briano di Rezze, Peter Rosenbaum and team

GCC Staff Involved: Dr. Carolyn Hunt, Angela Kielbowski

Type: Validity Testing

Status: Recruitment – April 2020

We plan to study how expert physicians recognize, understand, and navigate “shifts” (adjustments in the clinician’s understanding of a child and family’s story that impacts how clinical care is provided) as they provide care. The objective of this study is to explore how expert physicians recognize, interpret, and navigate shifts in their understanding of the child and family’s story as they provide care. By carefully exploring this phenomenon in clinical practice, we may uncover key competencies for teaching health professions students and preparing them for future learning.

Partner:  Holland Bloorview Kids’ Rehabilitation Hospital

Collaborators: Dr. Anne Kawamura

Type: Constructivist Grounded Theory with Interviews and Observation

Status: Ongoing – April 2020

The eHealth program Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) was developed to target the needs of children with a range of NDD, including ADHD, ASD, CP, and FASD. Using a randomized controlled trial design with a pragmatic trial approach, the study will evaluate the effectiveness of the BNBD-NDD eHealth intervention in treating insomnia in children 4-12 years of age with an NDD, including a diagnosis of mild to moderate ADHD, ASD, CP, and/or FASD. The primary research objective is to determine whether the intervention leads to improved child sleep at the end of treatment (4-month assessment) and if improved sleep is maintained at the long-term follow-up (8-month assessment).

Partner:  University of Toronto, Dalhousie University, Hospital for Sick Children

Collaborators: Dr. Shelly Weiss, Dr. Penny Corkum

Type: Intervention Study – RCT

Status: Ongoing – September 2020

The purpose of this study is 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: Cohort

Status: September 2019 – end of 2021

The purpose of this project is to establish feasibility and acceptability of the Botley’s Bootle Blast (BBB) intervention.

Partners: Holland Bloorview Kids Rehabilitation Hospital; Children’s Hospital of Eastern Ontario

Collaborators: Dr. Anna McCormick, Dr. Elaine Bidis, Dr. Darcy Fehlings

GCC Staff Involved: Dr. Carolyn Hunt, Dr. Shannon Knights, Angela Kielbowski

Type: Feasibility Randomized Control Trial

Status: Awaiting REB approval

In this study, researchers are looking to find the strengths and weaknesses of a robotic walker. This project will use focus groups to discuss the good points and weak points of the adult Gait Enable walker. The goal is to help change the Gait Enable walker so it can meet the needs of individuals 13-22 years of age, with Cerebral Palsy who use wheelchairs as their usual way to get around. The facts found from the focus group will also be used to help therapists in making walking programs with the walker for youth with Cerebral Palsy. After this project is complete, we hope to test the changed walker and its training program in a larger study.

Partners: Abilities Centre, Children’s Hospital of Eastern Ontario, Carleton University/GaitTronics Inc, Ottawa University

Collaborators: Dr. Anna McCormick, Dr. Hana Alazem, Dr. Aliasgar Morbi, Richard Beranek, Ph.D. Candidate

GCC Staff Involved: Corrie Dixon

Type: Focus Group and Interactive Comparison

Status: Ongoing – Step 4 & 5 – end of 2020

The overall aim of this study is to work with an integrated team of researchers and families to develop and evaluate an online Knowledge Hub promoting the F-words in Childhood Disability. The purpose of the Knowledge Hub is to inform families and service providers on 21st century concepts in childhood disability and provide action-oriented tools to support the uptake of a family-centered biopsychosocial approach in practice. Our specific research objectives are to: (i) Develop an online family-centered Knowledge Hub promoting the F-words in Childhood Disability; and (ii) evaluate the reach, usefulness, and the use of the Knowledge Hub by parents and service providers.

Partner: CanChild

Collaborators: Dr. Peter Rosenbaum, Andrea Cross

Type: Survey and Interview – recruitment only

Status: Ongoing – end of 2020

This project seeks to develop an autonomous wheelchair for use by school-aged children with Cerebral Palsy (CP).

Partner: University of Ontario Institute of Technology

Collaborators: Scott Nokleby, Heta Diwan and team

GCC Staff Involved: Janet Isaac

Status: Ongoing – awaiting additional funding

Who can participate?

• It is a requirement for the parent/caregiver to understand english.
• Parents/caregivers with more than one child where at least one of them has been diagnosed with Autism Spectrum Disorder (ASD)
• Parents whose child is enrolled at Grandview Kids.

What is the study about?

The purpose of this research study is to explore the sleep characteristics in families of children with Autism Spectrum Disorder (ASD). We are trying to understand the impact that Autism Spectrum Disorders (ASD) has on the sleeping behaviours of the family unit.

What is involved?

One on one interviews regarding the entire family units’ sleep will be held at the client’s choice of either the University of Ontario Institute of Technology or through an online format at a convenient time for the participant. The interview process will take approximately 45-60 minutes to complete.

Potential benefits?

The expected results of this study include contributing to the development of sleep interventions aimed at improving sleep quality in the entire family. You may indirectly benefit by contributing to the understanding of the sleep characteristics of families of children with ASDA chance to win a $20 gift card to a business of your choice.

Who can participate?

• Age 6–18 years
• Clinical and MRI-confirmed perinatal ischemic stroke (NAIS, APPIS, PVI)
• Symptomatic hemiparetic CP including child/parent perceived limitations in function with disability severity that allows lifting the affected arm above a table surface and some ability to grasp light objects

What’s involved?

• A 2-week summer camp, 5 days a week from 9am-4pm
  • Be randomly assigned to either the intervention (tDCS) group or the control (sham) group (50/50 chance)
  • Wear a watch on each wrist to see how much you move your hands and arms during the camp.
  • Engage in activities that involve using your hands with the research OT 4 times through the duration of the study (about 3-4 hours each session)
  • You will be asked to answer some questions about your home and school life, as well as your overall experience in the camp (about 30-60 mins)
  • If able (i.e., you have no metal in your body including braces, metal rods, plates, screws, nails, wire, or an electric implant or device), MRI pictures of your brain taken at 3 different time points (1 hour per session) at SickKids

Exclusion Criteria:

• Other neurological disorder not related to perinatal stroke
• Multifocal stroke
• Severe hemiparesis (MACS V)
• Severe spasticity (Modified Ashworth Scale >3)
• Severe delay or inability to comply with protocol
• Unstable epilepsy
• Any TMS or MRI contraindication
• Orthopaedic surgery, constraint, brain stimulation or other modulatory therapy in past 6 months.
• Botox in the past 4 months

What’s involved?

•       If you/your child participate, you/your child will be asked to complete questionnaires once a week for 6 weeks

•       The first meeting (baseline) will be at your treatment center & will last one hour

•       We will meet/email/phone you one time every week for five weeks (follow-ups 1 -5)

•       Four questionnaires emailed, mailed or over the phone (your choice) will take 5 minutes each (Follow-ups 1-4)

•       The last questionnaire emailed, mailed, by phone or in person at your treatment center (your choice) will take 30 minutes or less (Follow-up 5)

•       We will ask you questions about if you have any pain, what the pain is like, how it makes you feel and affects you.

•       Evening and weekend appointments are available

•       Participants will receive a $25 gift card as a thank you for their time

•       Volunteer hours for participation time

Who can participate?

We are looking for children and youth who:

1)    are 8 to 18 years old inclusive

2)    have been diagnosed with Cerebral Palsy (CP)

3)    can communicate with or without assistive devices

4)    can complete a sorting task

5)    are current or past clients of Holland Bloorview or Grandview treatment centres.

Why should you consider participating?

Your input will help us understand if and when you have pain, and how it makes you feel. You will help inform families, clinicians and researchers about how pain and well-being in children and youth with cerebral palsy changes over time.

Contact Information

If you are interested in participating in this study or have additional questions, please contact Heather Shearer at 416-425-6220 ext. 6597 (Toll free: 1-800-363-2440 ext. 6597), hshearer@hollandbloorview.ca or heather.shearer@grandviewkids.ca and she will get back to you shortly. Contacting us does not obligate you/your child to participate in the study.

We are inviting you and your child to take part in the Better Nights, Better Days for Children with Neurodevelopmental Disorders (BNBD-NDD) study! The purpose of the BNBD-NDD study is to evaluate the effectiveness of the online, eHealth program for parents of children with neurodevelopmental disorders who experience sleeping problems, including bedtime resistance, trouble settling to sleep, night waking, and early morning awakening.

Who can participate?

We are looking for parents of children ages 4 to 12 years old who have been diagnosed with Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy (CP), and Fetal Alcohol Spectrum Disorder (FASD) across Canada.

What’s involved?

•       If you participate, you will be asked to complete assessments at 3 periods: baseline, 4-month follow-up, and 8-month follow-up

•       At each assessment:

–      You will complete a Sleep Diary for 7 days

–      Your child will wear an actigraph (a watch-like device that measures sleep) for 7 days

–      You will answer a series of questionnaires about your child’s sleep, daytime behaviour, and the parent’s functioning

•       To thank you for your time and effort, you will receive $25 for each assessment period you complete, and a bonus $25 for completing all three assessments, for a potential total of $100

•       Interested families can enter the online study database to begin eligibility assessment at the following link: http://ndd.betternightsbetterdays.ca/

Why should you consider participating?

Your input will help us evaluate the effectiveness of the eHealth BNBD-NDD program designed specifically for parents of children with neurodevelopmental disorders.  The BNBD-NDD program is designed to teach parents skills to help improve their child’s sleep using behavioural techniques. This study may help provide accessible treatment to parents for childhood sleep problems and improve childhood insomnia in the future.

Contact Information

Sydney Dale-McGrath, BA, MA

Research Manager

bnbd-ndd@dal.ca

The CP-NET Research Database is an Ontario Brain Institute funded research project. We are collecting information to better understand how many kids are affected by Cerebral Palsy (CP) in different parts of Ontario and what causes CP so that we can improve care and treatments.

What’s involved?

Study participants will attend two research assessments, approximately 1-4 years apart. During the first assessment we will ask you questions about your family and medical history and your child’s experience with CP. We will collect saliva samples from you and your child. We will also ask to review your family’s medical charts and collect any past brain scans your child may have had. During both assessments, your child will be seen by a doctor who will examine his or her movements. Lastly, your child may be given a brief learning assessment during the second assessment.

Who can participate?

Children aged 2-7 years old, who have CP and live in certain regions of Ontario.

Why should you consider participating?

Your participation will enable researchers to study the causes of CP, identify risk factors and develop treatments and interventions to improve outcomes and care for children with CP. You will receive a $20 gift card to Chapters after the completion of each research assessment.

Contact Information

Angela Kielbowski
(905) 728-1673 ext. 2547

Information updated: August 29 2017
Study expires: December, 2023

Holland Bloorview Kids Rehabilitation Hospital Autism Research Centre and the POND-Network are currently conducting new research studies across Ontario to understand how genes and biology affect the brain and behaviour in Autism and other Neurodevelopmental Disorders.

What’s involved?

Please contact Susan Day Fragiadakis (see below) for detailed information on current studies.

Who can participate?

Children 21 years or younger who have a Neurodevelopmental disorder (e.g., ASD, Intellectual Disability, Rett Syndrome or Fragile X, Down Syndrome, Anxiety Disorder) and typically developing children between the ages of 3 – 21 years.

Why should you consider participating?

By participating you are helping researchers understand how genes affect the brain, body, and behavior, and then translate this understanding into new ways to help individuals with autism and associated neurodevelopmental disorders.

Contact Information

Susan Day Fragiadakis
(416) 425-6220 ext. 6518
sfragiadakis@hollandbloorview.ca

Information updated: August 29, 2017
Study expires: March 31, 2021

The Autism Research Centre at Holland Bloorview Kids Rehabilitation Hospital is conducting a research study looking for young people (ages 12-17) with ASD. The overall goal of the study is to see if the medication tideglusib helps to improve symptoms of Autism Spectrum Disorder, specifically social engagement, social functioning (e.g. learning how to talk to others, making friends) and repetitive behaviours.

What’s involved?

The study lasts a total of 16 weeks (about 4 months) and involves taking the medication dissolved in water every day for three months, with a follow up visit one month later. You and your child will first be asked to come in for a screening session; through talking with you and completing some assessments we will determine if your child meets eligibility criteria. If your child meets criteria, you will then receive either tideglusib or placebo. Visits will take place every two weeks while your child is taking the drug or placebo. This study also has an optional continuation part, which means that if you were given placebo, you will be able to take tideglusib at the end of the four months. The same tests and procedures will be followed that were followed during the main study.

Who can participate?

Individuals aged 12-17 with Autism Spectrum Disorder who meet the eligibility criteria identified at the screening session.

Why should you consider participating?

Participation in this study will help researchers see if the medication tideglusib helps to improve symptoms of Autism Spectrum Disorder.

Contact Information

Naomi Peleg
(416) 425-6220 ext. 3456
npeleg@hollandbloorview.ca

Information updated: August 29, 2017
Study Expires:

We are inviting you and your child to take part in the National Physical Activity Measurement (NPAM) study! The purpose of the NPAM study is to measure current trends in physical activity, sleep, and screen-time behaviour among Canadian children and youth with disabilities.

Who can participate?

We are looking for Canadian children and youth (ages 4 to 17 years) with any type of disability and their parents to participate. Please note that at this stage in our study, children and youth with Autism Spectrum Disorder are not eligible to participate.

What’s involved?

• Children and youth will be asked to wear a Fitbit for 30 days, ideally for 24-hours a day.
• Youth (ages 10 to 17 years) will be asked to complete one, 45-minute telephone interview about their daily activities and well-being.
• Parents will be asked to complete a 30-minute online survey about their child’s daily activities and well-being.

Why should you consider participating?

Your input will help us understand the typical behaviours and well-being of children and youth with disabilities. This kind of information will help support the development of evidence-based policies and programs to better serve Canadian kids with disabilities.
Children and youth will have the opportunity to keep the Fitbit after wearing it for 30 days. Youth will receive 5 community service/volunteer hours for completing the interview. Parents will receive a $10 gift card of their choice for completing the online survey.

Contact Information

Ritu Sharma
ri.sharma@mail.utoronto.ca

What’s involved?

Researchers from Australian Catholic University are testing a new online questionnaire to describe how a child uses vision in everyday activities – the new ‘Measure of Early Vision Use’.
If you choose to participate, you will be asked to complete an online survey. There are some questions about you and your child, and the ‘Measure of Early Vision Use’ (MEVU) to complete. MEVU consists of 14 questions and should not take more than 10 minutes to answer, however completion of the entire survey may take up to 40 minutes depending on how many sections you complete. You may open the survey by clicking on the link provided here: http://j.mp/2Nbj4wK

Who can participate?

They are seeking parents and caregivers of children aged between 3 months and 12 years of age who have a diagnosis or high risk of developing cerebral palsy. Children with a range of visual abilities are being sought, from a good ability to use vision, to the ‘not so good’.

Why should you consider participating?

Vision is important to all areas of development and learning. If you are the parent or caregiver of a child with CP, taking part in this research will help establish a new measurement tool that may be used with other families in the future. We hope this may help more children in the future. Responses from parents in the testing phase (now!) are needed for that to happen.

Contact information

For more information please contact:
Belinda Deramore Denver
belinda.deramoredenver@myacu.edu.au

The purpose of this study is to assess the common and unique factors related to musical experiences, social development, and emotional well-being across diverse children and families. We will assess these factors in families of children with and without developmental, medical, or mental health needs. We are interested in the musical/arts experiences of the children, parents, and family as a whole.

What’s involved?

Parent responses to an online survey. Survey questions ask families about their general background, children’s musical experiences, parent-child relationship, parent’s musical experiences and well-being and children’s play interests.

Who can participate?

Parents of children 6 months to 5 years of age with or without ASD, developmental or language delay, neurodevelopmental genetic syndrome, or other health impairments. The goal is to collect online survey responses from 800 parents across Canada and the USA.

Contact information:

Access the survey at
https://is.gd/MusicChildrenFamilies