Survey: Share Your Experience With Telehealth and Services During COVID
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Study: Behavioral and Cognitive Inflexibility in Fragile X Syndrome
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
Study: Adult Fragile X Premutation Carriers Needed for Registry
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
Survey: Cannabidiol (CBD) Use with Fragile X Syndrome
A Mount Sinai Genetic Counseling graduate student is conducting a research study to learn about possible benefits and side effects of CBD supplements when used to treat FXS symptoms. This information will be obtained by using an anonymous online parental and caregiver survey. About the Survey ...
Survey: How has the COVID-19 Pandemic Impacted Fragile X Families
Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic.
Exploring the Most Important Information for New Premutation Carriers
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Parents and Caregivers of Adults with Fragile X Syndrome Needed for a Survey
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X ...
Clinical Research Study: Brain Development in Relation to Behavior and Cognition
Males between the ages of 18 and 30 years with a diagnosis of Fragile X syndrome (full mutation) may be eligible to participate.
Parent Survey: Literacy Skills in Children with Fragile X Syndrome
The Research in Neurodevelopmental Disabilities Lab at the Waisman Center at the University of Wisconsin-Madison is looking for parents of male or female children 6 to 17 years old with Fragile X syndrome for an online survey.
Study: Join the FORWARD Registry & Database
The FORWARD Registry is open to individuals with any type of Fragile X disorder, and the FORWARD Database is open to individuals with a full mutation (including mocaicism).
PIXI Study: Parent-Infant Fragile X Intervention
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.
Study: Our Fragile X World Registry
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.
Study: Cognition, Balance, and Walking Patterns in Males With a Premutation
Doctors at Rush University are researching cognition, balance, and walking patterns in people who carry a premutation in the Fragile X (FMR1) gene.
Study: Fragile X Premutation Carrier at USC
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.
Study to Learn About the Cognitive Profile of Children with a Full Mutation of Fragile X
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.
