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.
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.
We are recruiting individuals who:
- Attended elementary, middle, or high school in Iowa
- 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.
- Please email us at firstname.lastname@example.org or call us at 1-877-275-7187 for more information!
- You can also visit us at http://familystudy.northwestern.edu for more information about our study.
Thank you in advance for your help and support of this important research!
The Neurodevelopmental Disabilities Lab
IRB STUDY #STU00051863
PI: Dr. Molly Losh
Dept: Communication Sciences and Disorders
View More Opportunities
The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.
This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.