BRAIN HEALTH-IDD VIRTUAL COURSE FOR ADULTS WITH IDD (CAMH, Remote)

Researchers at the Centre for Addiction and Mental Health (CAMH) are looking at an online class about brain health and developmental disabilities. In the class, you will learn about different things you can do to take care of your brain as you get older like eating well, sleeping well, getting fit, taking care of your mental health and more!

What happens when you do the study?

If you do the study, you would:

• Come to a 7-week online class with other self-advocates. Each class is 90 minutes long;
• Learn about different topics in the class related to brain health;
• Be interviewed three times by a researcher online (about 40-50 minutes each time) before the course, at the end of the course and 14 weeks after the course is over;
• Have the option to come to a focus group to talk about your experience after the course is over;
• Get a gift card at the end of the study.

Who can participate?

You can take part if you:

• Have a developmental disability
• Are 40 years of age or older
• Live in Canada
• Have internet access and a computer, tablet, or phone

Follow the link below to fill out an expression of interest survey and a member of our research team will reach out to you with more information.

For any questions, please email BrainHealthIDD@camh.ca.

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.