Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.
Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.
The University of Kansas Medical Center is conducting a survey to learn about the medical and mental health care needs of individuals and families affected by Fragile X syndrome, premutation carriers, and undiagnosed family members. Persons 18 years and over may be eligible.
Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with premutations of the Fragile X gene, FMR1. Individuals ages 50–80 with the FMR1 gene premutation with or without FXTAS may be eligible to participate.
Have you been diagnosed with FXTAS and want to participate in an exercise trial? Rush University is researching the effect of treadmill training with or without a combined thinking task in people with FXTAS.
Dr. Lawrence T. Reiter is conducting a research study to learn about the molecular changes that occur in neurons in individuals with autism. Your child does not need to have an autism diagnosis to participate.
The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.
This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
A survey to measure levels of behavior. When someone with FXS is experiencing anxiety, describe what you see and hear, and how the experience impacts your/their quality of life.