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. 

Participation

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.

LEARN MORE ABOUT THE REPRODUCTIVE DECISION MAKING SURVEY
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View More Opportunities

Parent Survey: Children’s Behavioral Strengths and Challenges

The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.

Study: Language Environment Analysis Project (LEAP)

Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.

Purdue Early Childhood Study – PANDABox

Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.

Fragile X Premutation Carrier Study at University of Kansas

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.