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: Single Dose Study for Adult Women and Men with FXS
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Study: Language, executive function, and quality of life of those with the Fragile X premutation
Researchers at the Waisman Center at UW-Madison are recruiting adults with the Fragile X premutation for a study on language, executive function, and quality of life.
Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists
The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.
Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.