The Translational Psychophysiology and Assessment Lab (T-PAL) at the MIND Institute at UC Davis is conducting a research study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of our ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.
About the Study
Who can participate?
Individuals with a confirmed diagnosis of fragile X syndrome and intellectual disability who are 26 or older 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 the MIND Institute at UC Davis (or an alternate research site including Cincinnati, OH; Denver, CO; Chicago, IL; Bethesda, MD) for one 5-hour visit day, and potential for a one-hour follow-up visit four weeks after the first visit. Home visits may also be accommodated.
The following is a list of some of study procedures and assessments that will happen during the study; Stanford-Binet Intelligence Scales, 5th edition (SB5), NIH Toolbox Cognition Battery, dementia-sensitive aging battery, Caregiver Vineland Adaptive Behavior Scales 3rd Edition Interview, other caregiver reports
What are the good things that can happen from this research?
Although there are no direct benefits to participation in the study, contributing to this research will provide crucial information for better understanding cognitive profiles and trajectories of aging adults with intellectual disabilities.
There will also be an opportunity for feedback and discussion of participant assessment results.
What are the bad things that can happen from this research?
There are no immediate risks to participating in this study. The length of the visit, and the nature of the cognitive testing may cause minor frustration or fatigue.
There may be other risks that we do not know about yet.
Where can I participate in this study?
There are several study sites where you can participate. Travel reimbursement is available for all families.
- UC Davis MIND Institute, Sacramento, CA
- Rush University, Chicago, IL
- Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
- University of Denver, Denver, CO
- NIH, Bethesda, MD
Will I or my child be paid to complete this study?
Participants receive a $100 gift card every visit.
Interested in Participating?
Our Most Recent Opportunities
Study: Identifying Translational Sleep Biomarkers in Autism
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
Single-Dose Study for Adult Men with FXS
Cincinnati Children's Hospital Medical Center is looking for males ages 18-40 with FXS to participate in a single-dose clinical trial that is studying a drug called Gaboxadol.
Study: Somatic symptom development in 6-12 year old females with an FMR1 mutation (SoS Study)
Researchers at the New York State Institute for Basic Research are conducting a study to better understand the development of physical (somatic) symptoms in females living with and without an FMR1 gene variation.
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.