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 $165 for participating in this study.
Interested in Participating?
Our Most Recent Opportunities
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.
Brain & Behavior Study
Researchers at Purdue University are conducting a natural history research study to learn about brain activity in females, ages18-60 years, living with the FMR1 premutation.
NFXF Gene Therapy Community Survey
Help the NFXF - share your thoughts on gene therapy.
Study: Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Males and females ages 50-80 living with the Fragile X premutation, with or without FXTAS, may be eligible to participate. The study includes remote & in-person visits at the University of Kansas.
Exploring Potential Barriers to the Fragile X Syndrome Cascade Screening Process
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.