The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation.
Participation
Who can participate?
Females ages 55–80 with the Fragile X premutation with or without FXTAS 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 University of Kansas – Lawrence and the University of Kansas Medical Center for 1-2 visits.
Participants will be asked to complete the following study tasks: cognitive testing, clinical neurological evaluation, motor testing, MRI, and a blood draw.
A clinical report may be provided upon request.
What are the good things that can happen from this research?
The goal of this study is to gain a better understanding of the cognitive and motor issues associated with FXTAS and identify markers associated with FXTAS onset.
What are the bad things that can happen from this research?
The potential risks related to testing are minimal, and they are no greater than those experienced through regular clinical evaluations. There may be other risks that we do not know about yet.
Will you/your child be paid to complete this survey?
Participants receive up to $90 for their participation in the study. Travel reimbursement may be available for participants.
This study is funded by the NIH/NIA.
Our Most Recent Opportunities
Study: Single Dose Study for Adult Women and Men with FXS
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
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.