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
Study: Our Fragile X World Registry
Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
Study: Cognition, Balance, and Walking Patterns in Males With a Premutation
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
Fragile X Premutation Carrier Study at USC
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.
Study to Learn About the Cognitive Profile of Children with a Full Mutation of Fragile X
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
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.
