The complexity and options for reproductive genetic testing are increasing rapidly. There are many options both before and during pregnancy, and the technology is changing. Stony Brook University and The New School for Social Research are studying the  reproductive decision-making process of individuals such as yourself. 


Who can participate?

​This is a voluntary, and completely anonymous, research survey for women and men who have had a child, or have an increased chance of having a child, with Fragile X syndrome (among other genetic conditions).

The focus of the study is recent consideration of reproductive options, like becoming pregnant, or currently pregnant, or using amniocentesis, or visiting a fertility specialist, or thinking of having children in the future, or have recently decided not to have (more) children.​

You are invited to complete this survey if you:

  • Are at least 18 years old
  • Have considered or used any of the reproduction topics above during the past 12 months
  • Can read/understand English.

What will happen in the study?

Participation in this research involves an anonymous online survey. It takes about 25 minutes to complete the questionnaire, and it can be completed in more than one sitting.

Will you be paid to complete this survey?

Upon completing the survey you can enter a raffle to win a $50 Amazon gift card! One will be drawn out of every 50 people who complete the questionnaire. An email address is required for entry into the raffle, so that Amazon can send it to you.

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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 ...