UNC Chapel Hill is conducting a research study to learn about the early brain and behavioral development of infants with FXS to aid in the future development of better supports and treatments.

 Interested? Learn more below.

About the Study

Who can participate?

Infants between birth and 24 months of age with FXS may be eligible to participate.  

What will happen in the study?

If the individual qualifies and decides to be in this research study, they will come to UNC Chapel Hill for an initial visit at 6 months of age and a follow-up visit at 24 months of age. 

The following is a list of some of the study procedures that will happen during the study:

  • Behavioral and cognitive assessments at each visit (at no cost to the family) – with a summary of results for the family
  • A safe, non-invasive MRI brain scan during natural sleep (no anesthesia or sedation involved) – with a copy of the MRI for the family
  • Parent questionnaires/surveys

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

Your child may or may not benefit from being in this study. However, we hope that, in the future, other people might benefit from this study because the information gathered in the study will add to our knowledge of brain development in neurodevelopmental disorders. 

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

Your child may experience slight discomfort being in the MRI or they may find the MRI to be loud. Children are fitted with earplugs (and/or headphones) and additional foam padding around the head to reduce any sounds of the scanner.  The risks involved in non-invasive MRI during natural sleep are rare and mild.  

All subjects and family members present for the scan are screened for any possible risk factors for MRI (e.g., having metal objects in his/her body such as clips from a previous surgery). There may be other risks that we do not know about yet.  

Will I or my child be paid to complete this study?

Participating families will receive $100 per completed study visit.  

Subjects will be compensated for any necessary travel costs (e.g., transportation, lodging) related to this study.  

 

Interested in Participating?

Our Most Recent Opportunities
If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.

Study: Aging in Toolbox

Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.