Stony Brook University and The New School for Social Research are conducting a study for women and men who have had a son/daughter with a genetic childhood disorder and/or are at risk for having a child with a genetic disorder, including Fragile X syndrome. The focus of the study is a recent consideration of reproductive options, like becoming pregnant or using amniocentesis or visiting a fertility specialist or deciding not to have future kids, etc.

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. They are studying the reproductive decision-making process of individuals such as yourself. 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.

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.

MORE INFO AND TAKE THE SURVEY
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Purdue Early Childhood Study – PANDABox

6-18 month old boys and girls with the full mutation needed for a research study   Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Who can participate?  Boys and girls [...]

Rush University FXTAS Exercise Study

Have you been diagnosed with FXTAS and want to participate in an exercise trial? See the below flyer from Dr. O’Keefe’s lab at Rush University for details. View More Opportunites VIEW ALL [...]

Study: Family Relationships and Parenting of Children with FXS

The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.