FXS TECH Study

Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are working on technology to improve how to identify and track progress in children living with autism and Fragile X syndrome (FXS).

The study is currently recruiting children ages 18 months – 5 years old, and 12 – 18 years old.

About the Study

Who can participate?

Individuals living with FXS between the ages of 18 months – 5 years old, and 12 – 18 years old may be eligible to participate.

What will happen in the study?

If you qualify and decide you want to participate in this study, you will complete 2 research visits.

Visit 1:  Screening Visit (Virtual)
During this visit you will do the following:

• You and the study team will go through study details and the consent form. You will sign the consent form if you decide you want to participate.
• You will complete several forms that will help the study team understand your child’s demographic information, medical history and psychiatric history.
• You will complete a semi-structured survey interview regarding your child’s communication, daily living skills, socialization and motor skills.

This visit is done virtually.

Visit 2: Diagnostic & Cognitive Evaluation (In-Clinic or In-Home)
This visit involves the following:

• Cognitive testing.  The study team will conduct cognitive testing to estimate IQ.
• You/your child will participate in a diagnostic evaluation of autism with a trained evaluator.  During the autism assessment, the examiner will be wearing Tobii Glasses2 (smart glasses) and using a wall-mounted camera system to collect eye tracking data, video, and audio files for the digital health assessment.
• Caregiver forms.  You will be asked to complete some questionnaires that will help the study doctor learn more about your child’s social behaviors such as social awareness, information processing, and social motivation.

In-Home Option for Visit 2:
Based on location, study participation may be conducted via community visits.  Visits will be scheduled at your convenience.  Trained researchers will visit your home to complete only the required in-person assessments with support of remote data collection processes provided by the study’s sponsor.

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

You may not directly benefit from taking part in this study, but we hope that knowledge gained from this study may benefit others with neurodevelopmental disorders.

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

In this study, there is a risk of feeling tired due to long testing sessions.  The study team will try to accommodate you/your child by taking breaks during the time of testing.  You/your child may ask to take a break whenever you feel tired.

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

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

For in-clinic visits, you will be paid $100 for each completed study visit and an additional $20 for parking/transportation.  Payment total will be $120.  For in-home/community visits, total payment will be $100.

Interested in Participating?