Caregivers of children with Down syndrome 2 to 17 years old are invited to complete a survey helping
develop the first-ever tool measuring challenging behavior that is specifically made FOR children with
Down syndrome and created WITH the Down syndrome community.
Who can participate in this study?
Caregivers of a child with Down syndrome ages 2 to 17 years old who live in the USA
Who cannot participate in this study?
- The child is younger than 2 years, 0 days old
- The child is 18 years, 0 days old or older
- The parent/caregiver is 17.99 years old or younger
Where does this study take place?
This study is an online survey through the REDcap database. After clicking the link to the survey, English-speaking families will only have the option to complete the survey online. Spanish-speaking families will have the option to do the survey online, on the phone, or via zoom.
What activities are involved in this study?
Eligible caregivers complete a confidential online survey regarding how often behaviors occur and how severe certain behavioral concerns are. Caregivers also complete a supplemental survey about basic demographic information and their child's medical conditions.
What is the expected time commitment of this study?
The survey will take about 20 to 50 minutes to complete, and participants can return to the survey if needed. Some caregivers will be asked to fill out others surveys about behavior or complete the BIDS 2 weeks later.
What languages does this study support?
English and Spanish
Is compensation provided?
Yes
If you have any questions or are interested in joining the research study, please contact Aine Powell at aine.powell@cchmc.org.