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: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.
Survey: Fragile X Nutrition Survey
The University of Wisconsin-Madison is conducting a survey to learn about associations between infant feeding and neurodevelopment in children with Fragile X syndrome.
Clinical Trial: Phase 2B/3 Studies of BPN14770 in Fragile X syndrome
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 12-45.
Study: Aging in Toolbox
Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.