why get involved in research?
“Research provides hope that maybe tomorrow will be a little bit easier and better than today. It allows me to find comfort in knowing that there are dedicated researchers working to generate new understandings, treatments and therapies.”
– from a teen living with JIA
Although currently, there’s no known cause or cure for juvenile arthritis and many other childhood rheumatic diseases, there is hope for a pain-free future for kids through the incredible research that is being done every day, across Canada and the rest of the world.
Research that is not possible without YOU!
Cassie + Friends is proud to support community-informed research initiatives, that address our family’s core concerns and knowledge gaps by providing funding, building partnerships, submitting letters of support, grant writing, and through facilitating connections between research partners and prospective research participants like you! Through your participation, researchers can collect and generate data that may result in evidential support for advocacy work and innovative discoveries that transform the lives of kids and families affected by JA and other pediatric rheumatic diseases. Help us help kids with JA and other Rheumatic diseases get back to being kids by considering participating in the research opportunities below.
ongoing studies
Please reach out to info@cassieandfriends.ca if you have questions or suggestions for studies that we could share with our community.
Identifying ‘neutral’ experiences of people with JIA
What’s involved?
A short, virtual interview and the chance to help a fellow youth with JIA complete her thesis.
Why is it important?
The study is recruiting participants to speak about how they may view their JIA as neither good nor bad – but simply as part of their life, with the goal of more comprehensively represent the range of JIA patient experiences and help those supporting them (such as their families, carers, medical professionals, etc.) in better understanding this experience.
Criteria for participation:
- Must speak English & live in Canada
- Age 16-30 years
- Have an official diagnosis of JIA, and have been diagnosed for five or more years.
- You must have active JIA or be in medicated remission
If you or your child meets the participant criteria and feel able to speak to neutral experiences with JIA, contact Jillian Wickert at jwickert@ualberta.ca, for more information. For questions regarding participant rights and ethical conduct of research, contact the Research Ethics Office at (780) 492-2615
Power Over Pain Research Study
What’s involved?
Expanded access to the Power Over Pain Portal and resources we well as an opportunity to receive gift-cards for completing online questionnaires.
Why is it important?
The Power Over Pain Portal was co-designed in partnership with Canadian youth who have chronic pain, to empower young people to develop new skills to manage and reduce the pervasive impacts of chronic pain on their lives. By compiling evaluations of the Power Over Pain Portal design and utility from youth living with chronic pain, this research study aims to improve the services and resources that the Power Over Pain Portal provides.
Criteria for participation:
- Age 12-18 years
- Have had chronic pain for more than 3 months
- Reside in Canada
- Are not a hospital clinic chronic pain patient
To learn more & participate, please click HERE.
Teens’ Experiences Coping with Chronic Pain: What Factors Matter?
What’s involved?
Researchers at the University of Guelph are currently running two different studies aimed at improving our understanding of lived experiences of youth coping with chronic pain. You may participate in one or both studies.
Option 1:
An online questionnaire that will take about 20 minutes to complete and a chance to win a $100 Amazon gift card. You must live in Canada or the UK to participate. Link to questionnaire: https://bit.ly/
Option 2:
A 60-minute interview over zoom where you will be asked questions about your understanding of coping, past experiences coping with chronic pain, and the factors you believe to impact your coping experiences. You would be compensated with a $25 Amazon Gift Card. You must live in Canada, the US, the UK or Australia to participate. To sign up, contact Natisha Nabbijohn by email at anabbijo@uoguelph.ca
Why is it important?
These studies aim to understand teens’ experiences coping with chronic pain and ways healthcare professionals can better support them in their coping.
Criteria for participation:
- Age 14-19 years
- Have chronic pain for more than 3 months
- Can communicate and read in English
- Do not have a major developmental disability
For more information please contact Natisha Nabbijohn by email at anabbijo@uoguelph.ca or Dr. Meghan McMurtry at cmcmurtr@uoguelph.ca.
Advancing patient-centered care in young people living with chronic pain
What’s involved?
Take part in interviews and create an art product of your choice (e.g., taking pictures, recording a short video, drawing, painting, dancing, writing a poem/song, or body mapping) that represents your chronic pain experiences, and receive an honorarium for your time.
Why is it important?
While 1 in 5 Canadian youth experience chronic pain that negatively impacts their physical health, academics, social life, development, and mental health, current chronic pain services rely on a one-size-fits-all approach that only treats the physical aspects of pain. This often leaves young people feeling misunderstood, unheard, and that the care they have received is inadequate, failing to meet their unique needs.
The goal of this study is to improve patient-centered care for young individuals with chronic pain through understanding their experiences, including their needs, priorities for care, and desired outcomes.
Criteria for participation:
- Age 12-34 years
- Living with chronic pain since adolescence
- Residing in Canada
If you are interested in this study, for more information please contact Dr. Roberta Woodgate by email at inguage@umanitoba.ca or by phoning +1 (204)481-4994.
The RADAR Study: Rheuminating About Alcohol, Drugs, and Sex
What’s involved?
An online survey, and optional participation in a virtual focus group, for the chance to win a prize valued up to $200.
Why is it important?
The RADAR study was created with the goal of better understanding what, when, and how, adolescent patients would like to receive information about how alcohol, drugs and sexual activity affect their disease. The study results will inform the creation of tools and resources that will address this in a helpful way.
Criteria for participation:
- Age 16-22 years
- Have a rheumatic disease
To learn more & participate, please click HERE.
University of Guelph: Evaluating a free ‘e-resource’ for Needle pain and fear management
What’s involved?
Read a picture book with your child. Complete a brief survey to review an e-resource and a virtual 1-hour interview. Receive a giftcard up to $25.
Why is it important?
The treatments available for childhood rheumatic diseases like #JIA and #Lupus have significantly improved over time. Despite this, little has been done to address the often extreme anxiety and pain of infusions, blood draws and home injections hasn’t changed. Giving a small child or teen an injection – often weekly – can be terrifying for both the child and their caregivers. The injection itself can be painful and uncomfortable, and it may also lead to mental health issues like panic and anxiety, making the child more reluctant to adhere to their treatment plan. For parents, who are suddenly thrust into the role of medical caregiver, having to administer treatments that cause pain for their child is an added burden too.
The goal of this study is to evaluate a free “e-resource” that consists of a picture book for children and evidence-informed tools and strategies for parents to independently manage needle-related pain and fear.
Criteria for participation:
- Be 18+
- Live in Canada or the United States
- Have a child between the ages of 5-8
To find out if you are eligible to participate, please click HERE.
Mental Health Survey
What’s involved?
A 5-minute Survey, with the chance to win 1 of 5 $50 Amazon Gift Cards!
Why is it important?
This study aims to understand the challenges faced by young people and their families across Canada dealing with rheumatic diseases.
Insights gained from this survey will play a crucial role in shaping better support systems for young people throughout Canada who are navigating pediatric rheumatic diseases.
Criteria for participation:
- Age 14-25 years with a rheumatic disease
- Family members and people who can speak about a patient’s experience
- Healthcare Providers who treat patients with rheumatic diseases
To learn more & participate, please click HERE.
The Impact of Childhood-Onset Lupus on the Developing Brain
What’s involved?
Two study visits (5 Hours Each), 1 year apart, at SickKids Hospital. Compensation for participation includes certified volunteer hours, a gift card, picture of your brain scan, and a summary of cognitive results.
Why is it important?
This study aims to understand the effects of lupus on the emotional and cognitive functions of the brain. It looks to answer questions like:
- Why do some patients with lupus experience depression, anxiety, trouble with memory and concentration?
- How does lupus affect the developing brain?
- What are potential improvements in diagnosis and treatment for youth with brain changes related to lupus?
Criteria for participation as a healthy control:
- Age 10-16 without lupus or other chronic medical conditions
To learn more & participate, please email cSLEphone.Study@sickkids.ca or phone: (416) 813-6323.
Rheum2Play
What is involved?
We will ask you to fill out an online survey. This survey will take about 30 minutes to complete and will ask a series of questions about your child’s movement behaviours. We will ask you about any observed activity limitations in your child and prioritize your concerns with respect to fundamental movement skills (catching, throwing, balancing, jumping etc.)
Why is it important?
Movement skills like throwing a ball, running, and jumping, are the building blocks needed to develop a healthy, active lifestyle. Most children will learn these skills as toddlers and preschoolers, and then improve these skills over time. In the Rheum2Play Study, we are interested in learning about parents’ and physiotherapists’ perspectives on the development of movement skills in 1-to 5-year-old children with JIA.
Criteria for participation:
- Parent of a 1- to 5-year-old child diagnosed with JIA
If you are interested, you can email us at rheum2play@gmail.com or leave your contact information here and we will get in touch with you!
M3: Making Mindfulness Matter
Introducing M3, a mindfulness program designed for children with Juvenile Idiopathic Arthritis (JIA).
What’s involved?
This is a research study that looks at how participating in an online, 8-week mindfulness-based program may improve stress and help you cope with big emotions and build resilience within the family.
You will be asked to complete questionnaires about your experience at the start and end of the study.
Why is it important?
This research project aims to help kids develop essential skills for emotional well-being and resilience through engaging activities and interactive lessons. M3 teaches children how to manage stress, understand emotions, and cultivate a positive mindset. Additionally, there is a concurrent parent program, providing support and resources to help families navigate this journey together.
Criteria for participation:
- Children 4-12 years old with JIA and their caregiver
- Must receive care at London Children’s Hospital, SickKids, or McMaster Children’s Hospital.
Join us in empowering your child to develop self-awareness, resiliency and confidence with M3! To thank you, we will provide you with a gift card.
For more information, contact: Sarah Wells, Coordinator, 519-685-8500 ext. 56816, kidsrheum@lhsc.on.ca
ask about these studies in clinic
The Canadian Alliance of Pediatric Rheumatology Investigators National Registry
The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) network includes all pediatric rheumatology centres in Canada that care for children with JIA. The CAPRI-JIA National Registry enrolls all children and teens diagnosed with JIA in Canada at CAPRI centres.
Information is collected from children and parents, and pediatric rheumatologists at each visit, helping to learn how JIA affects the lives of children and teens, study treatment effectiveness and frequency of side effects from treatments, and understand long term disease outcomes.
For more information, please contact Dr. Jaime Guzman at jguzman@cw.bc.ca or Martha Sieres at martha.sieres@cw.bc.ca.
Research Collaboration: Canada & Netherlands
Juvenile idiopathic arthritis (JIA) is a group of diseases that can decrease quality of life and lead to lifelong chronic disease for pediatric patients. Providing timely and effective treatments is crucial to improve short and long term health outcomes for children. Biologic therapies are common treatments which may come with undesired side-effects and are often prescribed without a treatment end-date. In collaboration with researchers in Canada and the Netherlands, UCAN CAN-DU is studying how to improve treatment gaps and disease activity outcomes.
Researchers are working to develop a system to predict a child’s arthritis disease course, a clinical tool to predict response to therapy and to identify the risk of relapse after continuing therapy. If a patient agrees to enroll in UCAN CAN-DU, they will be asked to provide medical history, complete questionnaires about the impact of JIA on their family and provide two blood samples for biomarker testing.
For more information, please speak with your rheumatology team.
Ondansetron Premedication Trial in JIA
OPT-JIA is a clinical trial in which researchers will try to prove whether Ondansetron, an anti-nausea medicine, is effective in helping prevent MTX-induced nausea in kids with JIA. Ondansetron has been used in children with other diseases safely for decades and the study requires no extra lab tests or visits to the clinic. The study aims to give kids and families their lives back by preventing nausea and vomiting before they start.
Click HERE to read a blog about why this trial is important to our community.
Criteria for participation
- Age 4-16 years
- Diagnosis of Juvenile Idiopathic Arthritis
- Followed at a CAPRI center in Canada
- Starting methotrexate to control JIA manifestations (arthritis, uveitis, psoriasis).
For more information please speak with your rheumatology team or email us at info@cassieandfriends.ca.
