Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers.
About the Study
Who can participate?
Parents and caregivers of adults with full mutation Fragile X syndrome, including those with mosaicism, may be eligible to participate. Adults with Fragile X Syndrome includes individuals at least 18 years old.
What will happen in the study?
If you agree to take part in this research, you will be asked to fill out an anonymous survey online. Your participation in this study will take about 20 minutes. You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time. The survey must be completed in one sitting.
What are the good things that can happen from this research?
The possible benefits to you for taking part in this research are learning about possible living arrangements and financial support options.
What are the bad things that can happen from this research?
The possible risks to you in taking part in this research are:
- Feeling uncomfortable
- Potential loss of confidentiality of data
There may be other risks that we do not know about yet.
Will you/your child be paid to complete this survey?
No
Study Doctor
Reymundo Lozano, MD
Advisor: Jayne Dixon Weber
Our Most Recent Opportunities
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Survey: Research experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
Survey: Developing a Gold Standard for Tracking Adult Functional Outcomes in Developmental Disabilities (AFS Study)
University of Pittsburgh is conducting this research to develop the Adult Functioning Scale (AFS), a new survey being designed to capture outcomes in the areas of social functioning, employment, independence, and satisfaction for individuals with various developmental disorders.
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