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
Assessing Parental/Guardian Experiences with Genetic Counseling for Fragile X Syndrome
Molly Mizenko, a student researcher in Indiana University’s Genetic Counseling Graduate Program, is conducting a survey to explore the experiences of parents and guardians who have received genetic counseling following their child’s diagnosis of Fragile X syndrome.
Study: Examining Factors that Influence Expectations for Individuals with an Intellectual or Developmental Disability (IDD)
Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.
Study: Identifying Translational Sleep Biomarkers in Autism
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
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.