Are you, or someone you know, a carrier of the FMR1 premutation?

If so, you may be eligible for our study of language and social characteristics in fragile X syndrome and the FMR1 premutation!

Our research team at Northwestern University is studying language and social characteristics related to the FMR1 gene involved in fragile X syndrome (FXS). We have been fortunate enough to work with many wonderful families in the fragile X community, and have promising results on the horizon! A big THANK YOU to everyone we have had the opportunity to work with so far! Similar to the mission of the National Fragile X Foundation, we are seeking to accelerate the process of learning more about FXS by advancing research toward improving treatments for this specific population. In order to achieve this goal, we are looking to recruit additional families affected by FXS, and women who carry the FMR1 premutation and who grew up in Iowa.

Why Iowa?

Standardized academic testing (for example, the Iowa Test of Basic Skills (ITBS)) refers to state or district-administered tests, given to most students during elementary, middle, and high school. These tests are often administered multiple times throughout childhood and adolescence, and so provide valuable data on language and cognitive development over time. Studying these standardized test scores allows us to see how parents’ abilities may relate to variation in the FMR1 gene.

Criteria

We are recruiting individuals who:

  • Attended elementary, middle, or high school in Iowa
    AND
  • Are carriers of the FMR1 premutation or the parent of a child with Fragile X syndrome.

Where is the study?

  • We are located in Evanston, IL (just outside Chicago).
  • We can travel to you or pay for your travel to us, whichever is most convenient for you and your family.

What will I receive?

  • Each family member who participates will receive up to $50 compensation, depending on level of participation.
  • Upon request, we can provide the results of genetic testing and completed research assessments.

What does the study involve?

  • Participation can range from questionnaires only, to a full participation in an on-person battery of assessments that will last approximately 4 hours. The full battery includes tasks such as solving puzzles, telling stories, and talking about your friendships.
  • A blood draw (optional).
  • If your child with FXS participates in the study, you will be asked to complete an additional in-person or phone interview about your child’s developmental history that lasts approximately 3 hours.

Contact

Thank you in advance for your help and support of this important research!

Sincerely,

The Neurodevelopmental Disabilities Lab
Northwestern University
877-275-7187
familystudy@northwestern.edu

IRB STUDY #STU00051863
PI: Dr. Molly Losh
Dept: Communication Sciences and Disorders

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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.