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.
Assessing Validity and Reliability of the Gross Motor Function Family Report (GMF-FR) for Children and Adolescents with Cerebral Palsy
What is the purpose of this study?
The research team will assess children and adolescents with CP using this instrument to see if the GMF-FR can be used to measure gross motor function at home and in the community, taking advantage of the parents’ expertise as the world’s expert on their child.
Who can participate?
Parents of children and adolescents with CP (2 to 18 years of age) will be invited to participate if:
- They are diagnosed with CP, GMFCS Levels I to V
- Were born in 2003, and after
Participants with clinical neuromotor characteristics consistent with CP, such as spasticity or mobility impairments, will be included in the study if, in the judgment of the physical therapists providing their therapies, these children ‘look like’ they have CP, even if no formal diagnosis has yet been given.
What is involved?
If you decide to be in the study, the GMF-FR will be sent to you by e-mail link for you to complete. A random selection of participants will be sent the link two times, at least one week apart, for repeat scoring. It takes around 5 to 15 minutes to complete the whole instrument.
A plain language report with the score obtained and the results of the study will be sent to each family after the study is completed.
What are the potential benefits to participants?
- Be part of the process that will help build a new tool that is easy for parents to use, practical and informative of gross motor function of children and adolescents with CP. This will potentially improve the ease and efficiency of evaluation processes and therapies that can be provided to children across the world.
What are the potential risks to participants?
The risks involved in participating in this study are minimal. People sometimes feel uncomfortable with the questions about their child or family. During the filling of the tool, the families can choose not to answer any question, with which they might feel uncomfortable.
Who should I contact if I am interested?
Paula Chagas: chagasp@mcmaster.ca
Researcher(s): Peter Rosenbaum, Professor of Pediatrics, McMaster University
Funding Agency: N/A
Recruitment Deadline: September 30th, 2022
Evaluation of Virtual Care Services Offered to Children Across Ontario
What is the purpose of this study?
The research team aims to evaluate how the delivery and outcomes of virtual care provided by organizations across the province can inform future provision of services for children and their families.
Who can participate?
You are eligible to participate in this study if:
- You are the parent/caregiver of a child under the age of 18 who receives care virtually or has in the past, from an organization in Ontario
OR
- You are a service provider/practitioner who provides, or has in the past, virtual care or assessment of children under the age of 18 in Ontario
OR
- You represent an organization within Ontario that provides virtual care to children
AND
- You possess English fluency in reading and writing
What is involved?
If you decide to be in the study, you will be asked to complete an online questionnaire. The questionnaire will take about 20 minutes to complete.
You will receive a $20 gift card to a store of your choice for your time.
What are the potential benefits to participants?
Be part of the process that will help monitor virtual care implementation and enhance virtual care service delivery
What are the potential risks to participants?
There are no significant risks associated with this project. Some participants may feel bored, nervous, uncomfortable, or stressed when filling out the questionnaires. The questionnaires may take longer to complete than participants thought they would. If this occurs, we encourage taking a break. The questionnaires do not have to be finished or done all at once.
Who should I contact if I am interested?
Elyse Rosa: rosae@mcmaster.ca
Researcher(s): Stelios Georgiades, Associate Professor, Faculty of Psychiatry & Behavioural Neurosciences, McMaster University
Funding Agency: Empowered Kids Ontario
Recruitment Deadline: August 31, 2022
Illustrating Inequities: The SANI Project
Are you between the ages of 13 and 24 years with a disability? Do you identify yourself as a racialized person? Are you a parent/caregiver or healthcare provider of a racialized child with a disability? Would you like to help contribute important changes to the healthcare system? We want to hear from you! Tell us about your healthcare experiences and any challenges you’ve faced in accessing or providing services and resources.
What is the purpose of this study?
Researchers are trying to learn more about what it is like having a disability and being racialized. In this study, researchers want to hear about the unique experiences of racialized youth with disabilities, their parents/caregivers, and the healthcare providers that serve them, in getting or providing the healthcare and resources that they need.
Who can participate?
- Youth aged 13 – 24 years living with a disability in Ontario who identify themselves as racialized
- Parent/caregiver of racialized youth with a disability living in Ontario
- Healthcare provider (based in Ontario) serving racialized youth with disabilities
What is involved?
If you decide to be in the study, you will be asked to do a short questionnaire and an interview that will take about 1 to 1.5 hours. In the interview, we will ask questions about how you experience healthcare, what services and resources you use, the difficulties you may have faced, and the emotions and feelings you had. If you need help speaking or understanding English, you can have a family member with you. During the interview, your voice will be recorded. Nobody else will be able to listen to your interview except for the research team.
You will also be asked to complete two art activities. You will be asked to take photos of your experiences and talk about them. You will also be asked to choose one more art activity that involves drawing pictures or portraits. You will be given art supplies like pencils and pastels to complete your drawings. Together, these art activities will take 2 to 3 hours to complete. Your artwork will then be put up on display at Holland Bloorview for others to see. Your name will not be on your artwork.
Altogether, the study will take about 3 to 5 hours to complete.
Participants will receive a $25 gift card or 10 volunteer hours as a token of appreciation for their time.
What are the potential benefits to participants?
- Have your artwork displayed in a public mural
- Raise important issues around being a racialized person with a disability
- Be part of the process of change within the healthcare system
What are the potential risks to participants?
There is a possibility that participants may feel uncomfortable, sensitive, or emotional when narrating their experiences and participating in the arts-based activities
Who should I contact if I am interested?
Zehra Kamani: zkamani@hollandbloorview.ca
Researcher(s): Dr. Timothy Ross, EPIC Lab at Bloorview Research Institute, Dr. Fiona Moola, HEART Lab at X (Ryerson) University
Funding Agency: Centre for Leadership
Recruitment Deadline: July 31, 2022
Parent Perceptions of the Everyday Abilities of Their Child with Autism
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
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:
Recruitment ongoing until March 2022
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
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
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.
