Recruiting: Behavior and Cognition in Fragile X Adults Research Study at Stanford University

Purpose of the study

Researchers at Stanford University are conducting a clinical research study to learn about behavior & cognition in adults with intellectual & developmental disabilities. Information learned from this research can ultimately contribute to the development of treatment and intervention.

Eligibility

Male between 18 and 30 years with a diagnosis of FXS (full mutation) may be eligible to participate.

Study Participation Details

Participation involves 1 phone screening visit to determine eligibility for the study, a 2-day in-person visit to Stanford, and 1 phone call check-in visit at the end of the study.

Study procedures during the in-person visit involve:

  • A cognitive and behavioral evaluation performed by trained staff
  • Online survey for parents
  • Injection of imaging agent (up to 10 mCi)
  • PET/MRI scan
  • Blood draw (equivalent to 2 tablespoons)
  • Collection of the saliva sample

Participation in the study is voluntary and the participant can withdraw at any time during the study.

Potential Benefits
  • Discussion and written report of results from the evaluation
  • High-resolution images of the brain from PET/MRI scan
  • Access to ongoing updates about outcomes of the study
Travel Arrangements/Study Compensation

Expenses related to travel and accommodation for the participant and an accompanying family member will be arranged and paid for by the study team.

At the end of the completion of all study procedures, the participant will receive compensation in the form of a gift card (eg. Amazon).

Contact Information

For further information or to participate, you can send an email to Pavithra Mukunda (Research Coordinator) at chinresearchlab@stanford.edu or call (650) 497-2578.  For general questions about research participants’ rights, contact (866) 680-2906.

Trial Location

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Enrollment Information

Pavithra Mukunda
(650) 497-2578
chinresearchlab@stanford.edu

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FRAXA-funded researchers around the world are leading the way towards effective treatments and ultimately a cure.

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