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.
BROCHURE WITH MORE INFORMATION

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
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Study: Parent-Infant Fragile X Intervention (PIXI)

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.

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.

Parent Survey: Children’s Behavioral Strengths and Challenges

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.