The purpose of this study is to focus on how individuals from the Down syndrome community (caregivers and self-advocates) understand how to participate in research studies, how they perceive research studies, and how past experiences shape their decisions in participating in research studies.
Who can participate in this study?
- Caregivers (Speak English or Spanish) of loved ones with Down syndrome, age 18+
- Self-Advocates diagnosed with Down syndrome, age 18+
Who cannot participate in this study?
- Anyone under the age of 18
- Self-Advocates who do not speak English
- Individuals who do not have access to a computer or mobile device.
Where does this study take place?
This study takes place online or over the phone.
What activities are involved in this study?
- Online survey
- Interview
What languages does this study support?
English (caregivers and self-advocates), Spanish (Caregivers only)
Is compensation provided?
No
If you have any questions or are interested in participating in the Caregiver and Self-Advocate Perspectives on Research Design and Information (PARDI) study, please contact Dr. White at Amanda.White@cchmc.org.
IRB # (2024-0659)