Overview
The following is a list of studies that are actively recruiting participants. These studies have been divided into their own drop-down bar. Click on each study individually to learn more about it.
Sharing your thoughts on what you child with autism CAN DO in everyday life
What is the purpose of the study?: This graduate research is a qualitative exploration of the perspectives of parents of children with ASD, with an aim to examine parent experiences with both their child and the health systems as these experiences relate to function-focused care.
Am I eligible to participate in this study?: Study participants must be a) able to communicate in English with interviewers, b) Have a child (any age) diagnosed with autism, and c) Have received some form of autism health service in Ontario for their child.
Are there any risks to participating?: We will be asking parents to reflect on their perspectives on their child’s diagnosis as well as their experiences working with health professionals and service providers, in which they may experience distress. The risks of privacy breaches are minimal, as the interview process is unknown to any individual outside the research team. However, this study will use Zoom (McMaster licensed account) to collect participant data, an externally hosted cloud-based service. If participants are concerned about the use of this software for interviews, this team is prepared to make alternate arrangements for parent participation including telephone interviews.
What are the benefits of participating?: We will be providing a brief user-friendly report that indicates the results of the study to all participants by the end of this project. No incentives are provided at this time.
Partner: McMaster University
Principal Investigator: Dr. Briano Di Rezze
Type: Interview
Status: Recruitment active November 2021 – January 2022
Contact: Kajaani Shanmugarajah, MSc(Candidate) at shanmugk@mcmaster.ca
Anxiety and depression in youth with cerebral palsy: Role of physiological risk factors
Aim of the study
The overarching objective of the proposed project is to investigate the role of physiological risk (pain, fatigue, and sleep) and protective (physical activity) factors in the development of internalizing issues in youth with CP.
To achieve this objective, we will determine whether there are associations between common secondary health symptoms (pain, fatigue, disordered sleep), physical activity behaviours and anxiety and depression symptoms in a large sample of youth with CP. We hypothesize that moderate to severe levels of pain and/or fatigue, as well as sleep difficulties and low levels f physical activity, will be associated with the presence of past and current anxiety and depressive disorders and/or symptoms.
Participants will have to wear the Actigraphs for 7-days in their normal routine, and complete daily questionnaires that should take no longer than 10 minutes each day. These daily questionnaires will objectively measure daily pain interference, fatigue and sleep quality, participants will be sent a daily email including a link that will allow them to complete a visual-analog scale related to each of pain, fatigue and sleep. Youth will also complete the Positive and Negative Affect Scale- Child (PANAS-Child) daily. The at-home assessment (period in which the Actigraph is worn) may take place either before or after the family’s online assessment. This will depend on how far in advance the appointment is made. Regardless of which portion is first, participants will be mailed the Actigraph package with a return postage-paid package to mail the Actigraphs back to the study team. The online/live session is approximately 3 hours long. Actigraph instructions and logs will be distributed to each family via mailing by the local PI. Particiapnts will be compensated for their time. There is no time commitment for the Grandview Children’s Centre other than providing recruitment materials to potential participants
Identifying the outcome measures that will be used
The outcome measures for this study are physiological risk factors (pain, sleep fatigue) and physical activity on mental health outcomes (depression and anxiety symptoms).
Identifying the participants of the study
Youth must have an ongoing diagnosis of cerebral palsy and be between the ages of 8-18 years participate in the study. At least one parent of each youth will also be asked to participate in the study, all participants must be verbal and fluent in English to participate.
What are the risks (i.e., blood work) to the participants?
Risks of participating in the study are minimal. Completing the measures may cause some participants to feel mentally fatigued. They may also reveal some issues that were previously unknown to the family (e.g. cognitive and/ or social emotional). In addition, there may be a risk of data breach and/ or privacy breach due to data collection being online.
Participants will receive a compensation of a 50$ gift card for participating in the study.
Partner: School of Physical Therapy at Western University
Principal Investigators: Dr. Carly McMorris (camcmorr@uwo.ca) and Dr. Laura Brunton (lbrunto3@uwo.ca)
Type: Activity, Assessment, Questionnaire
Status: Recruitment – October 6, 2020 – December 31, 2021
Contact: chearlab@uwo.ca
A randomized placebo-controlled trial of ARBaclofen vs. placebo in the treatment of children and adolescents with ASD – “The ARBA” Study
Have you been diagnosed with an autism spectrum disorder? Do you have social difficulties and/or repetitive behaviours? You may be eligible to participate in a clinical trial of a medication called arbaclofen!
The trial will last a total of 18 weeks (4.5 months) and involves taking either arbaclofen or a placebo, as a meltaway tablet, 1-3 times per day for 18 weeks. 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.
Visits will occur at Holland Bloorview and will take place every 2-4 weeks while your child is taking the drug or placebo. This study also has an optional continuation part, which means that all participants will be able to take arbaclofen at the end of the 18 weeks. The same tests and procedures will be followed that were followed during the main study.
Participants will receive a small token of appreciation in the form of a $20.00 gift card to thank them for their time.
Partner: Holland Bloorview Kids’ Rehabilitation Hospital
Principal Investigator: Dr. Evdokia Anagnostou
Type: Placebo test
Status: Recruitment – January 2018 – December 2021
Navigating the Medical and Social Merry-Go-Round
“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
Exploring Sleep Behaviours of Families with a Child with Autism Spectrum Disorder and their Siblings
Sleep problems in children with ASD are known to affect family functioning. Interventions for sleep problems within the ASD population have largely focused on behavioural treatments, including sleep hygiene education and parent training. Given the complexities of sleep behaviours among autistic families, sleep interventions cannot be targeted to the autistic child in isolation. Rather interventions need to target the sleep behaviours of the entire family unit. Before sleep interventions can be developed and evaluated with rigorous evaluative methods, an important first step is to get a snapshot of the sleeping behaviours of the child with ASD and how this impacts the family unit, including their neuro-typically developing sibling(s). This study will use a mixed-methods approach to explore the sleep behaviours in families with children with ASD.
Aim of the study
Using a mixed-methods approach, this study aims to answer the following research questions:
- What are the sleep habits and behaviours of families with a child with ASD?
- What are the parent/caregivers’ experiences and perceptions of sleep in their family, including facilitators and barriers to sleep?
Outcome measures to be used
This mixed methods study will utilize an on-line questionnaire and a semi-structured interview. For the on-line questionnaire, we will use the following published scales:
- Pittsburgh Sleep Quality Index
- Epworth Sleepiness Scale
- Children’s Sleep Habits Questionnaire
- Family Inventory of Sleep Habits
- Patient Health Questionnaire
Additionally, participants will be asked to respond to a range of questions focusing on demographics and questions about the context of their lives during this period.
Participants of the study
We will target parents/caregivers of at least one child diagnosed with ASD to report on their families’ sleep behaviours. The parent/caregiver must be able to communicate in English and have access to either a computer, mobile smartphone, or tablet to complete the on-line questionnaire. Given the exploratory nature of this study, we are targeting at least 100 participants.
What are the risks to the participants?
There are no known or anticipated risks from participating in either the on-line questionnaire or the semi-structured interviews. This study is entirely voluntary and participants are in no way obligated to complete the questionnaire or interview. All this information is contained in the informed consent. Any risks associated with this research study are no greater than those which may be encountered by participants in everyday life.
What are the benefits to the participants?
Study participants will not directly benefit from participating in the study. Should a parent/caregiver choose to participate in this study, they may benefit indirectly by contributing to our understanding of sleep behaviours in families of children with ASD.
On-line questionnaire compensation: A respondent may choose to enter their e-mail address at the end of the questionnaire should they wish to be entered in a random draw to win 1 of 5 $10.00 Gift Cards. Winners will be notified by the e-mail address they provided.
Phase II – Qualitative Interviews: To thank parents/caregivers for their time in completing the interview, parents will receive an electronic gift card valued at $20.
Partners: Ontario Tech University
Collaborators: Dr. Efrosini Papaconstantinou, Emma Grant
Type: Interview
Status: Recruiting
Better Nights, Better Days for Children with Neurodevelopment Disorders
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
Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) – Research Database
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
Province of Ontario Neurodevelopment Disorders-Network (POND-Network)
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
National Physical Activity Measurement (NPAM)
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
Please note:
GrandviewKids is only directly involved in the CPNET, the CP Pain and Well-being, and the ACSF:SC Studies. Recruitment for the other studies occurs off-site. Each study posted has been approved by the GrandviewKids Research and Innovation Committee.
