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
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Survey: Share Your Experience With Telehealth and Services During COVID
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Study: Focus Group on Difficulty with Changes and Rigid/Inflexible Behaviors in Fragile X Syndrome
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
Study: Adult Fragile X Premutation Carriers Needed for Registry
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Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
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 ...
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