This study is enrolling eligible young men ages 18–25 with Fragile X syndrome into a study of brain function. The research seeks to understand how protein formation in the brain is affected in Fragile X syndrome (FXS). Researchers will measure the rate at which the brain makes proteins (protein synthesis) and will identify specific parts of the brain affected in FXS. In the future, measurement of protein synthesis in FXS may help us to develop and test new therapies.
Protein Synthesis in the Brain of Patients With Fragile X Syndrome
Please see below for a short video about the study, a list of additional details and important links, and short form to contact the study coordinators.
About the Study
Please consider enrolling your child in our clinical research study of FXS. Travel, food, and lodging are provided for the study participant and one or two accompanying family members. You will receive compensation for your time and participation.
The study includes and covers:
- One visit, lasting several days, to the NIH Clinical Center, in Bethesda, Maryland.
- Assessment by physicians.
- Psychological assessment.
- Brain scan.
- Travel, food, and lodging for the patient plus one to two accompanying family members.
- Compensation for your time and assistance.
The study does not include:
- Investigational drugs/medications/sedation.
BASIC REQUIREMENTS
Please note: When you fill out the form at right, you will be asked to confirm basic participation requirements, which are listed below.
Eligible candidates:
- Are young males with FXS age 18–25.
- Are in good physical health.
- Are able to lay reasonably quiet for 45–60 minutes.
- Are not taking antidepressants or antipsychotics.
Fragile X Syndrome Principal Investigator:
Carolyn Beebe Smith
(301) 402-3120
Protocol Number:
06-M-0214
Clinicaltrials.gov Identifier:
NCT00362843
If you’d like to learn more or apply for this opportunity, please fill out the form to send your contact information to the study coordinators.
Our Most Recent Opportunities
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.
Fragile X Premutation Carrier Study 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.
