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.
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This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.