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.
Our Most Recent Opportunities
Study: Memory Game in Children with FXS
A study to learn about memory and memory development in children with Fragile X syndrome.
Focus Group: Parental Satisfaction with Fragile X Resources
A USC master’s program research study to learn about parents’ satisfaction with resources received when child is diagnosed with FXS.
POcKIT Study: At-Home Study for Young Children with FXS
Purdue University is conducting a research study to learn about how genetic, biological, nutritional, and environmental information relates to health and development in Fragile X syndrome.
Study: Adolescents and Adults with IDD Needed for a Spatial Abilities Study
The Spatial Development Lab at Montclair State University is conducting a research study to learn about spatial abilities, such as why we sometimes get lost in the environment. About the Study Who can participate? Individuals with intellectual and/or developmental disabilities, ages 12-25, may be eligible to participate. What will happen in the study? If the individual qualifies and decides to be in this research study, they will complete fun computer and paper games online, for ...
Survey: Medication Trials — What Should We Do Next?
Researchers at The Patrick Wild Centre are asking for your opinion on clinical trials and medications for Fragile X syndrome. Have a say in the future of clinical trials for Fragile X by filling out a 10-minute online survey.
Research Study: Power of the Point — Predictors of Early Language Development in Fragile X Syndrome
The Development in Neurogenetic Disorders Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.