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]

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?

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

Call for Participation – Online Event on Heritable Connective Tissue Disorders
February 17, 2026 | Bilingual event (French/English)

Do you live with Marfan syndrome, Loeys-Dietz syndrome, or Ehlers-Danlos syndrome?
Are you a family member, a healthcare professional, a researcher, or a member of an organization concerned with these conditions?

Join us for a day of dialogue and collective reflection on life trajectories with a Heritable Connective Tissue Disorder (HCTD).

This online event is part of a research project entitled:
Living with a rare, complex, multisystemic, and painful condition: Mapping the life course with a Heritable Connective Tissue Disorder,
led by Catherine Côté (Ph.D. student in Clinical Psychology, Université de Montréal) under the supervision of Dr. Gabrielle Pagé (professor and clinical psychologist).

Objectives of the event

Build connections, solidarity, and collaboration among the different stakeholders involved in HCTDs.
Explore, through group discussions, how existing clinical recommendations are actually applied in Canada.
Identify gaps in care and services, as well as key dimensions of the life course that need to be better understood.

Event outline

Before the event: You will be invited to complete a short questionnaire (sociodemographic information and reflections on clinical recommendations).
February 17, 2026: Participate in online discussion groups (with bilingual support) alongside patients, relatives, clinicians, researchers, and representatives from organizations.
After the event: You will be invited to complete a second questionnaire to share your impressions and help prioritize the collectively identified themes.

Interested in participating?

Please fill out this form to share your contact information : https://redcap.link/thtc_consultation_en

A member of our team will contact you shortly to confirm your eligibility and answer your questions.

Thank you for contributing to advancing research and improving life trajectories with an HCTD!