Researcher Grace Francis, PhD, is conducting an online survey study out of George Mason University. The survey aims to learn about factors that influence post-school expectations for individuals with an intellectual or developmental disability (IDD), including Fragile X syndrome (FXS).
About the Study
Who can participate?
Adults ages 18+ living with an IDD and individuals who have a family member with an IDD 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 an online survey. The survey should take about 10 minutes to complete and it can be completed in more than one sitting.
What are the good things that can happen from this research?
There are no direct benefits for completing the survey. However, researchers will use answers to understand ways in which we can improve expectations for individuals living with IDD, including FXS.
What are the bad things that can happen from this research?
We do not think that there are any risks or ways a person can be hurt by completing the survey. There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
The online survey is anonymous, however, there is an opportunity to be entered into a raffle for $25 Amazon gift cards if you provide your email address (optional).
Interested in Participating?
Our Most Recent Opportunities
Study: Identifying Translational Sleep Biomarkers in Autism
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Single-Dose Study for Adult Men with FXS
Cincinnati Children's Hospital Medical Center is looking for males ages 18-40 with FXS to participate in a single-dose clinical trial that is studying a drug called Gaboxadol.
Study: Somatic symptom development in 6-12 year old females with an FMR1 mutation (SoS Study)
Researchers at the New York State Institute for Basic Research are conducting a study to better understand the development of physical (somatic) symptoms in females living with and without an FMR1 gene variation.
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.