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Down Syndrome Research

Contribute to Advancing Down Syndrome Research in Canada

There are relatively few research studies dedicated to the Down syndrome community. This leaves a large information gap, which if filled, could mean improved care and support for Canadians with Down syndrome and their families. By participating in research today, you are providing critical information that will inform and guide future programs and advocacy work. Please browse the active studies below and thank you for helping to shape the future of our community.

Active Down Syndrome Research Studies

Pondering Puberty Recruitment

YOU & ME: PONDERING PUBERTY
CO-CREATING AN ACCESSIBLE HEALTH RESOURCE WITH TEENS WITH IDDS (University of Toronto, Remote)

A graduate student in the MSc in Biomedical Communications program at University of Toronto with the support of Surrey Place is calling youth and teenagers with Intellectual and Developmental Disabilities (IDDs) accompanied by their support person or guardian to provide feedback on the creation of a puberty education resource.

• In-person and online focus groups with individuals with IDDs between the ages of 8-30 will take place during mid-May. Focus group participants will receive a $25 gift card.
• For individuals who wish to contribute to this project without participating in a focus group, an anonymous online questionnaire can be filled out.

To participate, email Geneviève Groulx at ponderingpuberty@gmail.com

Accessibility Survey

GO BARRIER FREE: A STUDY OF GAPS AND BEST PRACTICES IN INFORMATION AND COMMUNICATION TECHNOLOGY ACCESSIBILITY SOLUTIONS
(New Brunswick Community College, Remote)

New Brunswick Community College is looking for people with disabilities and their caregivers to participate in a research study about accessibility standards. The study will examine accessibility standards in information and communication technologies, the built environment, and transportation to help identify and remove barriers in these areas as well as prevent new ones. You can choose how to participate:

  • An online interview via videoconferencing
  • An online survey

For full study details including more information about eligibility, click the link below.

To participate, please email Andrew.Urquhart@nbcc.ca

Down Syndrome and Autism Spectrum Disorder
Dual Diagnosis Study
(University of Toronto, Remote)

This study is seeking caregivers of children under 18 with Down syndrome, diagnosed with or awaiting assessment for ASD to better understand ASD in children with Down syndrome, defined care needed, and influence future clinical practices.

  • Caregivers of children with confirmed ASD diagnosis will be asked to complete a detailed survey (Estimated time: 20-30 minutes)
  • Caregivers of children in the process of seeking or awaiting an ASD assessment will be asked to complete a shorter survey (Estimated time: 5-7 minutes)
  • There is also an opportunity for one-on-one interviews for caregivers to share their experiences in a more personal setting. (Estimated time: 45 minutes)

For more information, email DS.ASD.trp@utoronto.ca

Better Nights, Better Days
Epilepsy Sleep Program
(University of Toronto and Dalhousie University, Remote)

Does your child with epilepsy have trouble sleeping? Researchers from the University of Toronto and Dalhousie University are recruiting families of children with epilepsy, including children with both epilepsy and a neurodevelopmental disorder (e.g., Down syndrome) to use and provide feedback on the Better Nights, Better Days program.

BNBD-Epilepsy is an online sleep program, accessible from any computer or smartphone, that will support you in helping to improve sleep for your child aged 4-10 years with epilepsy. To learn more about this study, and to see if Better Nights, Better Days for Children with Epilepsy is right for you, visit the study website. For more information, email bnbdepi@dal.ca

Decolonizing Childhood Disability HEART Lab (Toronto Metropolitan University, Remote)

This study explores the experiences of racialized children with disabilities when accessing and navigating the Canadian healthcare system. Researchers are exploring these experiences through multiple perspectives and are recruiting the following participants for interviews:

  • Children and youth ages 12-24 who live in Canada and self-identify as 1) racialized, Black, Indigenous, person of colour (BIPOC), and/or visible minority and 2) have a disability/ies
  • A parent, guardian, or caregiver of a child or youth with a disability who self-identifies as racialized, Black, Indigenous, person of colour (BIPOC), and/or visible minority

For more information or to participate, email alyssa.neville@torontomu.ca

Mindsets Coming Spring 2024

See Research in Action

The Global Mindsets Study was the first of its kind to explore the link between physical activity and cognition in individuals with Down syndrome. Contrary to typical fitness advice for people with Down syndrome, the study showed that regular exercise is not only beneficial but can improve cognitive abilities.

The results were publicly released in October 2023 and are now the foundation of the Mindsets Wellness Program. This new program is designed to help individuals with Down syndrome build healthy habits, providing the same opportunities to benefit from an active, healthy lifestyle as anyone else. Mindsets focuses on education and routine building in three main areas of wellness: fitness, nutrition, and self-care. You can currently preregister for the Mindsets Wellness Program, coming in 2024.

Resources for Every Stage of Life

Looking for already available Down syndrome research? You can find CDSS publications for each stage of life and recommended third-party research and resources in the library below.