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
Study: Focus Group on Difficulty with Changes and Rigid/Inflexible Behaviors 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 Who can participate? Parents and caregivers caring for somebody with FXS who uses, or has used, CBD supplements may be eligible to participate. The parent or caregiver responding to the survey must be at least 18 years old. The individual with ...
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 syndrome (FXS). This information will be valuable for current and future families when considering long-term supports, as well as for healthcare professionals, counselors, and policy makers. About the Study Who can participate? Parents and caregivers of adults with full mutation ...
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.
