About the Study
Who can participate?
Parents with a child 5-17 years old with a diagnosis of Fragile X syndrome (FXS) and an Intellectual Disability.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will attend a 1 hour zoom training session where participants and study team will:
1. Set-up the app and review how to use it/what to expect.
2. Define the different behaviors and discuss how the specific behaviors relate to their child. Participants will discuss various executive function related behaviors, or behaviors related to impulse control, attention, memory, and flexible thinking.
After the training the parent will record behavior observations in the app daily for 14 days. At the end of the 14-day observation period, the parent will be asked to complete 2 questionnaires and a short feedback survey.
Some participants will be eligible for in-home observations from a staff member. There is also opportunity to connect with the child’s teacher and complete behavioral observations in the classroom.
The following is a list of what to expect during the study:
- 1-hour Zoom session
- 5-10 minutes rating behaviors in the app for 14 days
- Completion of 2 parent questionnaires and a feedback survey (electronically delivered)
Note: participants will need to utilize their own smartphone for this study.
What are the good things that can happen from this research?
Although there are no direct benefits from the research you are contributing to the validation of a novel behavior tracking app which we hope to use in the future as a tool to learn more about your child and how to better help them.
This study uses an app. What sorts of privacy protections are in place?
As with all research, there is a chance that confidentiality could be compromised. To minimize the risks of breach of confidentiality, the study team will not include any information that directly identifies you on the information we collect, and on the data resulting from the research. Instead, the study team will record a code on the information, and we will keep a link between the code and your identity in a different location. The observations that are recorded on the iBehavior app do not contain any information that could identify you.
What are the bad things that can happen from this research?
There are no significant risks to participating in the study, although there may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Participants receive $100 e-gift card to compensate for their time and energy.
The study is entirely remote and requires no on-site travel.