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?
Reymundo Lozano, MD
Advisor: Jayne Dixon Weber