You can help us discover more about Fragile X syndrome and the FMR1 premutation!

Neurodevelopmental Disabilities LabOur research team at Northwestern University is studying language and social characteristics related to the gene involved in Fragile X syndrome, FMR1. We are looking at very subtle characteristics among carriers of the FMR1 premutation to help us understand more clearly how this gene contributes to differences in language and social characteristics in unaffected relatives of people with FXS.

If you grew up in Iowa and your family is affected by Fragile X, you can help!

We are recruiting individuals who:

  • Attended grade school or high school in Iowa and
  • Are carriers of the FMR1 premutation (whether or not you have a child with Fragile X syndrome), or are related to someone with Fragile X.

Where is the study?

  • We will travel to you or pay for your travel to us, whichever is most convenient for you.

What does the study involve?

  • Time commitment is based upon an individual person’s availability (any little bit helps!).
  • Full participation lasts approximately 3-4 hours. Partial participation lasts as little as 1 hour.
  • As a participant, you will do tasks such as: solving puzzles, telling stories, and talking about your friendships and how you relate to others.

What will I receive?

  • Each participating family member will receive up to $50 compensation.
  • Families will receive free educational reports for their participating children (e.g., language assessment).

Who do I contact?

Participating in this study is not the only way to get involved!

  • If this does not sound like something you are currently interested in, please consider sharing this information with your friends and family who may be interested in participating.

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


The Neurodevelopmental Disabilities Lab
Northwestern University
(877) 275-7187

IRB STUDY #STU00051863