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
Healing Children’s Pain Together
Let’s help improve the wellbeing, hurt, and discomfort of young people with neurodisabilities. Your voice matters, and it can help shape future pain care, research, and policy in Alberta!
We’re inviting children, teens, and young adults (under 25), families, caregivers, community organizations and health workers to help identify the top priorities for pain care, research, and policy.
Your experience can help guide what comes next. Complete this short survey and help us transform the way care looks for our communities.
People with Disabilities as Social Enterprise Enablers (thompson rivers university, Remote)
The Thompson Rivers University Innovation for Social Good cluster is exploring how social entrepreneurship training can benefit individuals with disabilities. They invite participants to engage with a free online social enterprise training program. The program can be completed at your own pace.
- Seeking people with disabilities 18 years of age and older
- Must have internet access and a computer or tablet for online training
- Must be willing to engage with surveys or interviews to evaluate the training.
To participate, complete the consent form linked below.
For more information, please email seability@tru.ca or toluwafemi@tru.ca
EXPLORING PARENT AND CAREGIVER PERSPECTIVES ON FRIENDSHIP AND PSYCHOLOGICAL WELL-BEING AMONG children 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. 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 7 to 12 to share their views on their child’s friendships when they were in elementary school.
- Participants will complete an online survey (less than 30 minutes long).
- 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.
Arts-Based Digital Knowledge Translation Tools or Parents of Children with Intellectual Developmental Disorders (university of alberta, Remote)
Researchers at the University of Alberta are developing educational resources designed to help parents of children with intellectual developmental disorders (IDD) navigate the uncertainty of emergency department (ED) visits. The study uses art and digital platforms to deliver health information through storytelling, aiming to improve parents’ understanding and reduce anxiety when seeking emergency care for their children.
- Parents of children with IDD are invited to provide feedback to inform the development of these arts-based resources.
- By participating, families will be helping to create resources that will benefit others in similar situation
How to Participate
Parents interested in participating can reach out directly to the research team at echokt@ualberta.ca for more information or to express interest.
This study is funded by the Canadian Institutes of Health Research and has been approved by the University of Alberta Research Ethics Board (Pro00062904).
For questions or more detailed information, please contact:
- Dr. Shannon Scott at Shannon.scott@ualberta.ca or 780-492-1037
- Dr. Lisa Hartling at Hartling@ualberta.ca or 780-492-6124
Walking for Health Study (anglia ruskin university, Remote)
Walking for Health is an outdoor intervention designed to see whether a simple and safe form of exercise such as walking, improves physical, brain and ageing health for adults with Down syndrome. We are looking for adults with Down syndrome (older than 18 years) with:
- No underlying health conditions that will be made worse from participation in physical activity
- Have access to a personal laptop/ tablet and mobile device
- Can speak and write in simple English
- Adequate neighbourhood walkability
The study will include a 12-week outdoor walking intervention, for 20 – 35 minutes, 3 – 4 times a week. The walks may get progressively harder at weeks 3, 6 and 9, by increasing the length and speed. This will ensure that the participants build fitness in a safe way.
To see whether this kind of exercise intervention improves health we will also conduct some short and simple to follow tests at weeks 1, 6 and 12. These tests will check for:
- Physical fitness
- Brain health (decision making, attention and memory)
- Aging health
The findings from this study will help inform inclusive and effective exercise programmes, clinical and support services, and guide organisations in promoting lifelong activity for people with Down syndrome. The study has ethical approval from the Faculty of Science and Engineering research ethics panel within Anglia Ruskin University, Cambridge.
For more information and to apply to participate, please visit https://app.onlinesurveys.jisc.ac.uk/s/angliaruskin/walking-for-health
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
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Study Results and Findings
Mindsets
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 2025.
Mind the Gap
Mind the Gap: Closing the Care Divide for Canadians with Dementia, is a powerful new report from the Brainwell Institute. This work brings much needed attention to the gaps that our community continues to face when it comes to dementia care.
“The Mind the Gap report highlights what families in our community know all too well: dementia care in Canada is not built for everyone. People with Down syndrome, who often develop dementia at a younger age, are frequently left out of planning and services. We support this report’s call for inclusive, equitable, and coordinated dementia care that leaves no one behind.” — Laura LaChance, CDSS Executive Director
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.
