About the Study

Why are we doing this research?

Researchers at Stanford University are conducting a clinical research study to learn about brain development in relation to behavior and cognition in adults with intellectual and developmental disabilities. 

Who can participate?

Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate. 

What will happen in the study?

If the individual qualifies and decides to be in this research study, we request one phone screening visit, two-day visit to Stanford and one phone call check-in visit.  

  • Total in-person visits: 1 
  • Total phone visits: 2 
  • Total hours of study participation: Up to 15 hours over multiple days

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

  • Comprehensive cognitive and behavioral assessments 
  • Parent questionnaires 
  • PET/MRI scan 
  • Blood draw (equivalent to 2 tablespoons) 
  • Saliva sample 
  • One time IV injection of imaging agent (up to 10 mCi) 

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

  • 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 

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

There are risks, discomforts, and inconveniences associated with any research study. Some of the risks include: 

  • You may experience warming and/or tingling sensation during the scan. You can inform the picture taker at any time to stop the scan if you are uncomfortable. 
  • You may listen to loud noises during the scan, but we provide you earplugs to minimize the noise. We can also minimize this discomfort through video and CD practices involving simulation of noises produced by the MR scanner. 
  • Mild discomfort, bruising, or bleeding at the injection site. It feels like a pinch when you receive the IV shot. This is common for any IV shots that you take at a clinic. Our trained staff will make sure the injection is less painful using an icepack as necessary. 
  • A small amount of radiation exposure which is essential to obtain the desired scientific information. It is comparable to a transatlantic flight.  

 There may be other risks that we do not know about yet.  

Will you/your child be paid to be in this research study?

At the end of the completion of all study procedures, participants will receive compensation in the form of a gift card (one time).  

Expenses related to travel and accommodation will need to be approved prior to scheduling. Approved travel arrangements will be paid for from the study account. This will cover the cost for the study participant and an accompanying family member. 

The study staff will schedule, arrange, and pay for travel and accommodation based on the availability of the participant and accompanying family member.  

Principal Investigator 

Frederick T. Chin, PhD
Stanford University-School of Medicine
chinresearchlab@stanford.edu

Our Most Recent Opportunities
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Survey: Cannabidiol (CBD) Use with Fragile X Syndrome

A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey.  About the Survey Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...

Survey: How has the COVID-19 Pandemic Impacted Fragile X Families

Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic. 

Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey

Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers.  About the Study Who can participate? Parents and caregivers of adults with full mutation ...