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: Aging in Mothers who Carry the FMR1 Premutation
The University of South Carolina is conducting a research study to learn about healthy aging in women who carry the FMR1 premutation.
Study: iBehavior- A Novel Behavior Tracking App Study for individuals with Fragile X syndrome
The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an iPhone or Android based mobile app at your convenience, you will record your child’s behavior daily for up to 3 weeks. About the Study Who can participate? Parents with a child 5-17 years old with a [...]
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Study: Autonomic and Sensory Functioning in Infants with FMR1 Conditions
Dr. Jane Roberts and the research staff at the Neurodevelopmental Disorders Laboratory at USC are conducting a research study to learn about the development of infants with Fragile X syndrome and Fragile X premutation over the first few years of life.
Survey: Research Experiences in Fragile X Families
The Brain and Biomarker Lab at the University of Oklahoma is conducting a survey to learn about experiences with research, particularly biomedical research, in families with Fragile X syndrome (FXS).
Study: Language Study for Children and Adolescents with Fragile X syndrome
Researchers at the University of Wisconsin-Madison and the University of Massachusetts-Amherst are conducting a study to learn about links between learning and language in Fragile X syndrome.