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.
Our Most Recent Opportunities
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.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.