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
Brain Health – Family Caregiver Course Video
Watch the video below to learn what the research study is about!
PROMOTING BRAIN HEALTH-IDD VIRTUAL COURSE FOR FAMILY CAREGIVERS (CAMH, Remote)
A group of researchers at the Centre for Addiction and Mental Health (CAMH) are studying a virtual education program for aging adults with intellectual and developmental disabilities (IDD), family caregivers, and service providers from across Canada. This online course is designed and delivered by family caregivers, alongside medical and mental health experts specializing in the care of adults with IDD.
Who Should Attend?
- Family caregivers aged 60 years and older caring for an adult with an intellectual and/or developmental disability
- Family caregivers (any age) caring for an adult with an intellectual and/or developmental disability who is aged 40 years or older
Dates: Every Wednesday, February 26 to April 2, 2025 | 2:30-4:00pm Eastern time
Program Highlights:
- Attend six weekly 90-minute interactive sessions
- Receive a course workbook, with extensive resources
- Complete 3 online questionnaires that take about 40-50 minutes each
- Before the course, at the end of the course, and 14 weeks after the end of the course
- Receive a gift card at the end of the study for participating
What participants are saying:
“This brain health program taught me how to uncover the dynamic relationship between my lifestyle and my brain health. And how to understand the cognitive behaviour of the person I am taking care of.”
“It was so good to hear about other’s personal stories and journeys related to the session topics. I also liked the breakout sessions…it was comforting to know I’m not alone.”
Participation is completely voluntary and will not affect any present or future services provided by CAMH. Any information collected for this study will be confidential.
For more information or support, please email BrainHealthIDD@camh.ca or call 437-328-6761.
DOWN SYNDROME REGRESSION DISORDER CAREGIVER DISTRESS SURVEY (University OF SOUTHERN CALIFORNIA, Remote)
With help from a medical student at USC, researchers including Dr. Jon Santoro are seeking to better understand the multifaceted impacts of DSRD on caregivers and families. Understanding the extent and nature of caregiver distress in this context is helpful in developing support systems that alleviate caregiver burden and enhance family resilience. In addition, this information will be critical in communicating the need for research on DSRD to organizations like the NIH.
- Participants must be over the age of 18.
- Participants must have a child or a close family member with a possible or probable diagnosis of DSRD.
- Participants should be knowledgeable about the family member’s diagnosis, symptoms, and treatment plan.
- Participants will complete a short online survey that takes approximately 10 minutes.
Follow the link below to participate in the study.
For any questions, please email knchow@usc.edu or dsresearch@chla.usc.edu
EXPLORING PARENT AND CAREGIVER PERSPECTIVES ON FRIENDSHIP AND PSYCHOLOGICAL WELL-BEING AMONG THIRD TO SIXTH GRADERS WITH DOWN SYNDROME (University OF REGINA, Remote)
A PhD candidate at the University of Regina is exploring friendship and psychological well-being in children with Down syndrome in Grades 3 to 6 to determine if this is a particularly critical period in their social development. The goal is to better understand the social networks of children with Down syndrome and provide information to develop targeted support to help them build strong social connections early in their school years, which may translate to lifelong friendships/friendship skills.
- Seeking parents and caregivers of children with Down syndrome in Grades 3 to 6.
- Participants will complete a 40 minute online survey.
- The survey will collect detailed information about children’s friendships, including the number of friends, time spent with them, and the quality of these friendships. It will also explore the children’s social skills, well-being, and the parents’ own mental health and parenting practices.
Follow the link below to participate in the study.
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.
