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
Project WellCAST: Caregivers of Children with Fragile X Needed for a Research Study
The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Study: Language, executive function, and quality of life of those with the Fragile X premutation
Researchers at the Waisman Center at UW-Madison are recruiting adults with the Fragile X premutation for a study on language, executive function, and quality of life.
Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists
The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.
Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.
Study: A Family Genetic Study of Autism and Fragile X Syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.