Clinical/Research Study Opportunities

Aim of the study

We are currently studying whether a group therapy program called Facing Your Fears (FYF), will help to reduce anxiety in children and youth with Autism Spectrum Disorder (ASD). FYF is a modified cognitive behavioural therapy (CBT) program for children and youth with ASD experiencing significant anxiety symptoms. We will provide everything virtually (through a platform called “Zoom for Healthcare”) so that anyone can participate in this study from home!

Who can participate?

• Children and teens between 8 and 13 years old
• Diagnosed with an autism spectrum disorder (ASD)
• Have a heightened level of anxiety symptoms (i.e. worries or fears)
• Must be verbal/conversational at a Grade 2 level or above
• Must be able to read at a Grade 2 level or above

*An initial screening assessment will be conducted to ensure eligibility for the program

What’s involved?

• The group consists of 12 weekly virtual sessions
• Parent and child participation are required each week
• Each session is approximately 1 to 1.5 hours(30-45minutes with parents & children; 30-45minutes parents alone)
• There will be 2 check-in calls with each family
• The group focuses on helping children and their parents identify worries, develop coping strategies and practice managing anxiety
• Participants are asked to complete questionnaires at the beginning and conclusion of the program

Potential benefits?

• Online FYF group sessions may help reduce anxiety symptoms
• This research may also help other children and families with ASD who are experiencing feelings of anxiety

Potential risks?

• You may feel tired, bored or uncomfortable answering questionnaires, doing weekly homework or participating in discussions that talk about your anxiety symptoms (i.e. worries or fears)

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Partner: Holland Bloorview Kids Rehabilitation Hospital

Principal Investigator: Dr. Evdokia Anagnostou

Type: Virtual group therapy, questionnaire

Status: Recruiting

Contact: Kristina Lee at 416-425-6220 ext. 3297 or klee@hollandbloorview.ca

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.

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Participants will receive a compensation of a 50$ gift card for participating in the study.

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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

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

Ryerson University is conducting a study to understand the experiences
of children and youth who identify as visible minorities with ASD. In the
study, you will be asked to discuss your 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:  Ryerson University

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

Type: Questionnaire, Interview, Activity

Status: Recruitment  – October 2020 – April 2021

“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

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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

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

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