Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.
About the Study
Who can participate?
Caregivers of individuals with Fragile X syndrome (of any age!) may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will complete survey online. The survey should take about 15-20 minutes and can be completed in more than one sitting.
What are the good things that can happen from this research?
Participants are expected to indirectly benefit from this study due to the general reward of being able to help with research, including potential to enhance best practices that may directly affect their participation in research in the future.
What are the bad things that can happen from this research?
There are no anticipated risks to the participant; however, there may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
Survey participants will not be paid.
Interested in Participating?
Our Most Recent Opportunities
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual 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.
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.