NOTE: This study is no longer accepting participants.
The MIND Group at the University of Minnesota is conducting a survey to learn about how genetic and neurodevelopmental differences impact children’s behavioral strengths and challenges. The information you provide will help us to understand the best ways to support children and adolescents like your child.
About the Survey
Who can participate?
Parents of 3–17-year-olds living in the U.S., Canada, New Zealand, and Australia are eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will complete a brief survey online. The survey should take about 10–20 minutes to complete. The survey may be completed in more than one sitting.
What are the good things that can happen from this research?
We cannot promise any benefits to you or others from your taking part in this research. However, your participation will help us learn whether there are better ways to monitor and support social development in children with different genetic and neurodevelopmental differences.
What are the bad things that can happen from this research?
The main risk of this study is that you may find some of the questions on the questionnaires difficult or boring to answer, or you may feel that they are sensitive or personal. You are free to not answer any question if you find it upsetting. Another risk of this study is that your information could become known to someone not involved in the study.
Will you/your child be paid to complete this survey?
If you take part in this research study, you can elect to be entered into a drawing for one of four prepaid Visa gift cards of the following value:
- One $100 gift card
- One $50 gift card
- Two $25 gift cards
To be entered, you must provide your email address. This information will be entered separately after you finish the survey and will not be connected to your survey responses in any way.
Our Most Recent Opportunities
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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