The Development in Neurogenetic Disabilites Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.

About the Study

Who can participate?

Mothers and their sons or daughters ages 18- to 36-months with a diagnosis of full mutation Fragile X syndrome 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 participate in three visits over a one-year period. Due to COVID-19, the visits will be conducted virtually via a secure Zoom meeting, and questionnaires will be completed online.

The following is a list of some of the study procedures that will happen during the study:

  • Structured, instructed play with toys by toddlers and their mothers.
  • Assessment of the child’s language and cognitive abilities, including an interview with mothers about their child’s daily skills.
  • Parent questionnaires about the family, the child’s language abilities, and parenting.
  • Mothers will complete a receptive vocabulary test and be interviewed about their experiences.

What are the good things that can happen from this research?

You will contribute to a growing body of research looking at early language development in Fragile X syndrome that will support early intervention efforts.

What are the bad things that can happen from this research?

There are no anticipated risks beyond those that exist in daily life to either you or your child if you choose to participate in this study.

  • We will be sure to provide frequent breaks throughout the assessment as needed, in order to ensure that your child does not become bored or frustrated.
  • We will work with you to make sure you and your child are comfortable throughout the assessment.
  • If your child becomes tired, stressed, or otherwise unable to complete all of the activities, the session will be ended, and your child will be assured that this OK.

There may be other risks that we do not know about yet.

Will I/my child be paid to complete this survey?

Participants receive a $30 Amazon gift card for each visit. No travel or study expenses will be incurred by families.

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