University of South Carolina logoThe University of South Carolina is conducting a research study to learn about the Fragile X premutation. The focus is on the range of language, social, and cognitive features that may be associated with variation on the FMR1 gene.

About the Research Study

Who can participate?

Women who are carriers of the Fragile X premutation, aged 35–75 years, may be eligible to participate.

What will happen in the study?

If the individual qualifies and decides to be in this research study, participation will take about 4 hours and will take place at the University of South Carolina or in a quiet room in the participant’s home, depending on participant preference. All travel expenses are covered by the project.

Participation will involve:

  • Answering questions and completing assessments about cognitive, language, and social styles, and preference and family experiences.
  • Providing a genetic sample (cheek swab) to index FMR1 gene variation.

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

We hope our results will help us learn how to better support families who have a child with Fragile X and individuals who carry the Fragile X premutation.

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

There is minimal risk associated with participation. Participants may experience mild fatigue or frustration while completing study activities; breaks will be offered as needed.

Will I be paid to be in this research study?

Participants receive $50. Travel reimbursement may be available for eligible families.

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Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.

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Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.

Fragile X Premutation Carrier Study at University of Kansas

The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.