Fragile X Study on HS Transition



Logo for National Fragile X Foundation.

Do you know a young adult with Fragile X Syndrome who is in ,or entering, their last year of high school or their transition program?

Dr. Leonard Abbeduto at the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute, University of California, Davis in collaboration with Dr. Jessica Klusek at the University of South Carolina and Dr. Julie Taylor at Vanderbilt University Medical Center are seeking participants for a study.

 What is the purpose of this study?

The goal of the study is to learn more about how certain abilities (e.g. memory), certain types of experiences (e.g. interactions with family), and biology affect language abilities in adulthood for both males and females with Fragile X syndrome. They are also interested in understanding how these factors and language/literacy skills affect the abilities of these young adults to function independently.

Who can participate?

Researchers are seeking teenagers and young adults entering or in their last year of high school or transition programs within the school district.

What does the study involve?

Participants will be in this research study for about 3 years. Families will have the option of completing the entire study at home through video teleconferencing or completing the first and last visits at one of the university testing centers and the remaining visits at home.

  1. You and your son/daughter will be seen for an initial visit (Year 1) that will involve 4–8 hours of testing/interviews over a 1- or 2-day period. The length of the visit will depend on whether you choose to participate through video teleconferencing or at one of the university sites.
  2. You will be asked to complete some questionnaires and a phone interview from home at two different points, one year apart (Year 2 and Year 3 visits).
  3. You and your son/daughter will be seen in a final visit (Year 4), again involving 4–8 hours of testing over a 1- or 2-day period. The length of the visit will depend on whether you participate through video teleconferencing or at one of the university sites.

What else is expected?

Travel costs will be covered by the study.

I’m interested! What do I do now?

Great! Head to the MyFXResearch post to complete the contact form. Someone will be in contact with you shortly.

You can also contact any of the three sites for more information:



2021

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