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.

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View More Opportunities

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.

Study: Language Environment Analysis Project (LEAP)

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.

Purdue Early Childhood Study – PANDABox

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.

Fragile X Premutation Carrier Study at University of Kansas

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.