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 be eligible to participate.
What will happen in the study?
Participants will complete a 30-minute interview about their experiences caring for a child with Fragile X syndrome. Interviews will be conducted over the phone, on Zoom, or through WhatsApp. Interview questions will focus on caregiver experiences and the supports and barriers faced.
What are the good things that can happen from this research?
This research will foster a deeper understanding of the challenges, needs, and research priorities specific to Black and Hispanic women who are raising children with Fragile X syndrome. We hope that this study will promote diverse representation and inclusivity in research, and inform better clinical care practices.
What are the bad things that can happen from this research?
Participating in the interview may involve discussing personal experiences and opinions, which could be uncomfortable or emotional for some women. We strive to create a comfortable environment and participants have the right to skip questions or withdraw from the study at any time.
Will I or my child be paid to complete this study?
Participants receive $20 for completing the 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.