Are you the parent of a child living with Fragile X facing challenging behaviors?  Researchers may have an opportunity for you, and it’s fully-virtual!

The Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center is currently conducting a research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.

About the Study

Who can participate?

Parents and caregivers of children ages 2 to 12 living with a genetic syndrome, like Fragile X syndrome (FXS), and associated Intellectual and Developmental Disabilities (IDD) may be eligible to participate in this study.

What will happen in the study?

If you decide you want to participate and you qualify to be in this research study, participation may last up to 8 months.  You will be asked to complete virtual study assessments at the initial visit and then bi-monthly for the 6 months.

In addition, you will be asked to participate in weekly or bi-weekly virtual intervention visits with a study therapist.  During these visits, you will be asked to complete various assessments to measure any improvements over the duration of the study and to use intervention strategies at home with your child.

What are the good things that can happen from this research?

You may not directly benefit from participating in this research study; however, based on experience with interventions in individuals with IDD, researchers believe this research may be of benefit.  Knowledge gained from this study may benefit others living with IDD and challenging behaviors in the future.

What are the bad things that can happen from this research?

In this study, there is a risk of you and/or your child feeling tired due to testing and sessions.  Researchers will do their best to accommodate your child by being flexible with scheduling and by taking breaks during testing and sessions.  You may ask to take a break whenever you or your child feels tired.

There may be other risks that we do not know about yet.

Will I or my child be paid to complete this study?

Participants can receive up to $300 for participating in this study.

Interested in Participating?

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