Research Projects

Quillivant, Azevan

What: ADHD and IDD drug study, aggression in FXS males remote drug study

Who: Children and adolescents aged 6y-25y with IDD and suspected or diagnosed ADHD, Males with FXS aged 18-45 whose aggression prevents in-person visits.

Why: To better understand if an experimental cognitive test on an iPad can detect changes in cognitive ability, to investigate how a new drug could reduce symptoms of aggressive behavior in FXS men.

Contact: Riley Argonis, riley.argonis@cchmc.org

Characterizing the Biology of FXS

Who: Anyone

What: A wide variety of optional tasks, including blood draws, cognitive testing, neuropsychological games, parent measures, EEG, MRI, eye tracking tasks

Why: The purpose of this study is to help us understand the biology of FXS by comparing data from people with FXS to typically developing individuals and individuals with other neurodevelopmental disorders.

Contact: Allison.Lacroix@cchmc.org

Autism Spectrum Disorder and Depression Study

Who: Teens and young adults (13-26 years old) who have ASD and major depressive disorder (MDD) may be eligible.

What: A research study to evaluate the efficacy of repetitive Transcranial Magnetic Stimulation (rTMS) in reducing treatment resistant depressive symptoms in people with autism spectrum disorder (ASD).

Why: To better understand how to treat depression in this population.

Contact: Priya.Ramesh@cchmc.org

Infant and Toddler Brain Function Study

Who: Infants and young toddlers with FXS

What: Multiple language measures & assessments, EEG, fNIRS

Why: This study uses a cap that monitors blood flow and electrical activity in the brain while the participant listens to sounds. The study’s goal is to find a link between brain activity and language impairment.

Contact: Kara.Snyder@cchmc.org

FORWARD MARCH Study

Who: People with FXS born between 2003 and 2020

What: Parent measures, cognitive testing and clinician forms during regularly scheduled clinic visits

Why: The purpose of this research study is to create a way to collect and combine data about people with fragile X syndrome (FXS) from clinics across the United States. This data will help establish the best ways to evaluate and treat people with FXS.

Contact: Ryan Zix, Ryan.Zix@cchmc.org

ENTRAIN

Who: Children 5 to 10 years old with FXS, ASD and healthy controls

What: The visits will include EEG testing (listening to the special sounds through headphones while wearing a wet cap with sensors), computer-based games, and a brief medical/psychiatric history interview.

Why: The ENTRAIN study aims to improve learning and decrease sensory hypersensitivity in individuals with FXS by playing special sounds through headphones to normalize brain activity. This process is called “auditory entrainment”

Pay: 2 clinic visits, each visit will receive $50

Contact: Lynxie Voorhees, Lynxie.Voorhees@cchmc.org

EEG Study of Brain Activity

Who: People 8-12 years old or 18+ with FXS and IQ < 85 OR typically developing controls
What: Clinical assessments, parent measures, cognitive testing, neuropsychological games, EEG and eye tracking tasks
Why: his study is looking at how the brain works and changes over time in FXS. It is a correlational study that enrolls individuals with FXS, their family members, and control groups.

Contact: Ali LaCroix, Allison.Lacroix@cchmc.org

Available Drug Trials (In Age Order)

Available Typically Developing Control Studies: