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.

UNDERSTANDING MENSES AND MENSTRUATION IN PEOPLE WITH INTELLECTUAL OR developmental DisabilitIES  (University OF CALGARY, Remote)

Researchers at the University of Calgary are investigating experiences of menstruation in individuals with autism, ADHD, and intellectual disabilities. They are seeking both caregivers and self-advocates to participate in a study, and hope to use this research to better understand menstruation in those with developmental and intellectual disabilities. This study has been approved by the research ethics board at the University of Calgary.

• Seeking self-advocate participants who have or have had a womb and are between 18-35 years old and caregiver participants who care for these individuals.
• Participants would complete a 30 minute survey and a 1 hour interview with a researcher. This interview can be online over Zoom or in-person.
• Participants will receive a $25 Amazon gift card to thank you for your participation.

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

For any questions, please email laura.stjohn@ucalgary.ca

Racialized Caregivers’ Experiences Accessing Healthcare and Social Services for Children with a Neurodevelopmental Disability  (Manitoba University, Remote)

Researchers at Manitoba University are conducting two surveys to better understand the experiences of racialized caregivers accessing healthcare and social services for children with a neurodevelopmental disability. Both studies have been approved by the Univerisity of Manitoba Research Ethics Board.

• Participants for both studies must live in Canada, be a member of an ethnic minority, and be the parent and/or primary caregiver of a child with a neurodevelopmental disability such as Down syndrome, autism, or ADHD.
• The first study requires completing a 35 minute online survey (linked below). Participants will be entered into a draw for a $50 gift card of their choice.
• The second study requires completing a 1.5 hour interview and drawing a journey map of meaningful places, people, and things. Participants will receive a $50 gift card of their choice.

To participate in the second study, or for more information, please email Michelle.Kee@umanitoba.ca

Project ASPIRE
Assessing Skills that Predict Independence and Readiness for Employment for Adults with Down Syndrome (DREXEL University, Remote)

Researchers at Drexel University are conducting a study to understand more about cognitive and behavioral factors that are associated with vocational outcomes and independent living skills among young adults with Down syndrome.

• Seeking family members of adults with Down syndrome between the ages of 18 and 39.
• Participation takes approximately 1.5 hours
• Participants will be asked to answer questions about their family member’s behavior, daytime activities, and your family’s background.
• Participants will be compensated for their time with a gift card.

  Questions can be directed to the study Principal Investigators, Dr. Nancy Raitano Lee
  and Dr. Gregory Wallace via email (ladder_lab@drexel.edu) or phone (215.553.7164).

  If you’re interested in participating in the study, please fill out the short survey linked below to determine eligibility.

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