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
Parent Survey: Literacy Skills in Children with Fragile X Syndrome
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
Study: Join the FORWARD Registry & Database
The FORWARD Registry is open to individuals with any type of Fragile X disorder, and the FORWARD Database is open to individuals with a full mutation (including mocaicism).
PIXI Study: Parent-Infant Fragile X Intervention
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.
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.
