The University of Rochester Center for Health + Technology is conducting a survey to learn about the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver. This information will then be used to develop a survey as a caregiver-reported outcome measure to be implemented in clinical trials and patient monitoring.
About the Study
Who can participate?
Caregivers who are 18 years that are caring for an individual with any mutation of Fragile X (FXS or the Fragile X premutation) may be eligible to participate.
What will happen in the study?
If the caregiver qualifies and decides to be in this research study, they will complete an online survey regarding the symptoms experienced by the individual with FXS, as reported by the caregiver. The survey should take about 20 minutes to complete. The survey may be completed in more than one sitting.
What are the good things that can happen from this research?
Information from this study can help build on the research already published and help provide further information regarding the disease burden of individuals with FXS.
We hope to publish the results of this study and develop a fully validated, disease-specific, observer-reported outcome measure to be implemented in therapeutic trials and patient care.
What are the bad things that can happen from this research?
Risks for the study are minimal. Some of the questions may make you feel uncomfortable. You will not be required to answer any question that you do not know the answer to or do not wish to answer. There are no other expected risks to you for participating in this study.
There may be other risks that we do not know about yet.
Will I or my child be paid to complete this study?
There is no payment for participating in this study.
Interested in Participating?
Our Most Recent Opportunities
Study: Recording the Experiences of Black and Hispanic Mothers who have Children with Fragile X Syndrome
Are you a Black or Hispanic woman raising a child with Fragile X syndrome? Researchers want to hear about your experiences. The South Carolina Family Experiences Lab is conducting 30-minute interviews to learn about the experiences of Black and Hispanic women raising a child with Fragile X syndrome. About the Study Who can participate? Black and Hispanic women of any age, who have a child with Fragile X syndrome, may [...]
Survey: What do you think about at-home research visits?
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.
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.