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Study: Fragile X Syndrome at NIH

//Study: Fragile X Syndrome at NIH

Study: Fragile X Syndrome at NIH

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.

If you arrived on this page through a MyFXResearch Portal search, you can close this window and return to your filtered results. Or start a new search here.
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Study: Family Relationships and Parenting of Children with FXS

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.

Survey: Needs and Experiences of Families with Young Children with Fragile X

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.

Early Development of Young Children with Fragile X in North Carolina

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.

Metformin in Individuals with Fragile X Syndrome

We have preliminary evidence that metformin, a common type 2 diabetes medication, is beneficial for language, cognition, and behavior in both children and adults with Fragile X Syndrome.

Describing Anxiety for People with Fragile X Syndrome

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.

Visual Perception Study

Our research is looking at how you see and remember the visual world, and how attention changes what we see. We hope our findings will provide a better understanding of the differences in vision and attention occurring in autism.

By | 2019-09-30T11:52:31+00:00 Jan 3, 2019|Opportunities for families|Comments Off on Study: Fragile X Syndrome at NIH

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