Research Studies
Research Studies
Community Participation in Research EDS Canada Foundation supports the further study into EDS, HCTD, and Chronic Pain. The following research studies are seeking patient involvement.
Please Note: All requests for research participants are to be provided for review of our Research Committee and after approval, all promotional material is to be provided as a word document with the limit of 2 images including logos as a vector logo to [email protected]
Brain Fog
We are seeking ages 18 to 65 with doctor-confirmed EDS to investigate common reports of brain fog. We ask you to answer 30 minutes of health-related surveys, and up to 1 hour of self-directed web-based attention and memory tasks. These 3 short tasks require a PC or Laptop in a quiet space as two tasks involve audio cues.
Please e-mail: [email protected] for our inform consent form to see full study details and see if you are interested.
StudyME
We are reaching out to invite those of you who would like to participate in research studies to join StudyME, a free global participant registry proudly launched by Open Medicine Foundation (OMF) in April 2023. This innovative recruitment tool is designed to bridge the gap between individuals living with ME/CFS, Long COVID and related diseases, and the researchers working tirelessly to uncover effective treatments and solutions.
Key Insights About StudyME
OMF’s StudyME has registered more than 11,600 participants across 61 countries and is currently recruiting for 13 studies, highlighting the global urgency for research in this field. The demographic data – unsurprisingly – reveals a pronounced sex disparity with a notable 5:1 ratio of female to male participants, primarily aged 25 – 55.
- Preliminary insights from the registry highlight the profound impacts of these conditions on everyday life. Participants have indicated that they are interested in research on the following areas:
- Graphic illustration showing Areas of Research Interest with the following percentages: Impairment in everyday activities: 87% Post-exertional malaise: 86% Cognitive impairment (brain fog): 81% Unrefreshing sleep: 78% Exercise intolerance: 77%
Amplifying Participant Voices
The goal of StudyME is to amplify the voices of those with lived experience of these debilitating conditions. It is our firm belief that the path to groundbreaking discoveries and meaningful advancements in treatment lies in ensuring that people with ME/CFS and Long COVID are not only heard but are also active participants in the research.
Accelerating Research
Participant recruitment is often one of the most time-consuming stages in the process, creating lengthy delays that can hinder progress. StudyME directly addresses this challenge by facilitating a direct and efficient link between potential participants and research teams. This not only accelerates the pace of research but enhances its quality and relevance, promising sooner breakthroughs that can transform lives.
Signing up is easy and takes less than five minutes. All you need to do is to provide your contact details and specify your areas of interest. No personal medical information is required. Click here to sign up.
Choosing the Right Model of Care- YOUTH
We are conducting a study on virtual versus in-person chronic pain management in children and adolescents. The purpose of this study is to co-create a decision aid. The decision aid will be a tool to help children with chronic pain, their families, and their healthcare team decide together whether an in-person or virtual appointment is best. This is called shared decision-making.
To participate, you will be interviewed by a research team member to learn more about your experiences with in-person and virtual care for your pain. The interviews will take place virtually over Zoom and will last about an hour. What we learn from participants in these interviews will help us to create the decision aid. All participants will receive an electronic gift card by email from the study team after their interview.
If you are 12-21 years old with chronic pain, or the parent of a 12–21-year-old child with chronic pain, we would love to hear from you!
Eligibility:
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 12 to 21
Inclusion criteria:
Eligible children and adolescents are:
- 12-21 years old
- Have pain that has lasted more than 3 months
- Are comfortable speaking and answering questions in English
- Live in Canada
- Are followed by a clinic for their pain
- Have had virtual care appointments before
- Have access to a computer, tablet, or smartphone with and an internet connection
Eligible adults are parents or primary caregivers of a child who:
- Is 12–21 years old
- Lives with chronic pain (i.e., pain lasting >3 months)
- Speaks English
- Lives in Canada
- Is followed by a clinic for their pain
- Has experience with virtual care
Exclusion criteria:
Participants are not eligible who have:
- Significant cognitive impairment
For more information and to confirm your interest, please contact: [email protected] or 403-955-5434
Posted July 11, 2024
Are you a youth or young adult with a disability?
Participate in Research: Bloorview Research Institute- Canada’s Only Hospital-Based Childhood Disability Research Institute at Holland Bloorview Kids Rehabilitation Hospital need your assistance.
Discrimination, ableism and racism hurt but inclusion can heal: Listening to the intersectional lived experiences of youth with disabilities and co-creating solutions
Consider participating in a study to share your experiences about disability discrimination and suggestions to enhance inclusion.
What is this study about?
We would like to understand the diverse lived experiences of youth with disabilities and particularly how disability intersects with race, ethnicity and gender. We would like to hear your recommendations for solutions to address disability discrimination and ways that we can enhance the inclusion of young people with disabilities.
Who can participate?
We are looking for:
- Youth with a disability, aged 15-29 years old
- Identify as belonging to a racial, ethnic and/or gender minority group
- Able to read/write in English (or with the help of an interpreter, can be provided upon request)
What’s involved?
- A 1-hour interview (via zoom or in-person)
Potential Benefits?
- There are no direct benefits of participating, but it may help us to learn about we can address discrimination and enhance inclusion of young people with disabilities
Participants will receive a gift card as a token of appreciation to thank them for their time.
REB #: 0533
TO ASK QUESTIONS OR TO SIGN UP, CONTACT Janice Phonepraseuth, [email protected] or Phone (416) 425-6220 x 3654
Principal Investigator: Sally Lindsay, PhD
Date Posted: Oct. 1, 2023
Version: Sept. 18, 2023
Deadline: August 31, 2024
Posted July 11, 2024
Are you in a role that involves making decisions that affect programs, policies or practices for youth or young adults with disabilities?
Bloorview Research Institute- Canada’s Only Hospital-Based Childhood Disability Research Institute at Holland Bloorview Kids Rehabilitation Hospital need your assistance. Consider participating in a study to share your recommendations about addressing disability or racial discrimination and suggestions to enhance inclusion.
What is this study about?
We would like to hear your recommendations for solutions to address disability discrimination and ways that we can enhance the inclusion of young people with disabilities.
Who can participate?
We are looking for:
- In a decision-making role that affects policies or practices for children, youth or young adults with disabilities
- Able to read/write in English (or with the help of an interpreter, can be provided upon request)
What’s involved?
- A 1-hour interview (via zoom or in-person)
Potential Benefits?
- There are no direct benefits of participating, but it may help us to learn about we can address discrimination and enhance inclusion of young people with disabilities
Participants will receive a gift card as a token of appreciation to thank them for their time.
REB #: 0533
TO ASK QUESTIONS OR TO SIGN UP, CONTACT: Janice Phonepraseuth, [email protected] or Phone (416) 425-6220 x 3654
Principal Investigator: Sally Lindsay, PhD
Date Posted: October 4, 2023
Version: October 4, 2023
Deadline: August 31, 2024
Posted July 7, 2024
Are you a clinician, service provider or educator with experience of working with youth with disabilities?
Bloorview Research Institute- Canada’s Only Hospital-Based Childhood Disability Research Institute at Holland Bloorview Kids Rehabilitation Hospital need your assistance. Consider participating in a study to share your recommendations about addressing disability or racial discrimination and suggestions to enhance inclusion.
What is this study about?
We would like to hear your recommendations for solutions to address disability discrimination and ways that we can enhance the inclusion of young people with disabilities.
Who can participate?
We are looking for:
- In a decision-making role that affects policies or practices for children, youth or young adults with disabilities
- Able to read/write in English (or with the help of an interpreter, can be provided upon request)
What’s involved?
- A 1-hour interview (via zoom or in-person)
Potential Benefits?
- There are no direct benefits of participating, but it may help us to learn about we can address discrimination and enhance inclusion of young people with disabilities
Participants will receive a gift card as a token of appreciation to thank them for their time.
REB #: 0533
TO ASK QUESTIONS OR TO SIGN UP, CONTACT: Janice Phonepraseuth, [email protected] or Phone (416) 425-6220 x 3654
Principal Investigator: Sally Lindsay, PhD
Date Posted: October 4, 2023
Version: October 4, 2023
Deadline: August 31, 2024
Posted July 7, 2024
Have your say in designing accessible public spaces
We are looking for people who use wheeled mobility devices to participate in a research study. We want to learn how dimensions of the spaces you use can be improved to make public spaces more accessible to navigate. Findings from this study will be used to develop building policy and design guides to improve accessibility in public spaces for Canadians who use wheeled mobility devices.
Participants must:
- Be at least 18 years old
- Live in Canada
- Use a wheeled mobility device (such as a manual wheelchair, powered wheelchair, or mobility scooter) during everyday functional activities
- Participants will be asked to attend a single session (~3 hours) and use their wheeled mobility device to maneuver through a set of paths and perform other daily activities (i.e. reaching to push a button). A series of questionnaires will also be completed.
The study visit will take place at one of the following locations:
- Toronto Rehab-University Centre (550 University Ave.)
- Toronto Rehab-Lyndhurst Centre (520 Sutherland Dr.)
Participants will receive an honorarium to compensate for their time and travel costs (e.g. taxi, parking, gas, etc.) associated with participating in this study.
For more information about the study, please contact Alison Novak at (416) 597-3422 extension 7878 or by email at [email protected]
Posted April 17, 2024
