Posted at January 29, 2013 | By: | Categories: Opportunities for families | 1 Comment

Research: Seeking Fragile X Premutation Carriers for a Study of Cognition

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of UC Davis MIND Institute. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. Your name or other personal information have not been shared with the researchers/company/institution. If interested in participating in this research, it is your responsibility to use the contact information in this announcement. Additional opportunities for being part of research studies can be found at research.fragilex.org.

Fragile X Spectrum as a Model to Explore Neurogenetic Mechanisms of Cognitive Dysfunction

UC Davis Mind InstituteFunded by the National Institutes of Health
Approved by the University of California, Davis Institutional Review Board (#221039-3)

Researchers at the UC Davis MIND Institute (Tony J. Simon, PhD, Principal Investigator and Susan M. Rivera, PhD, Co-Principal Investigator) invite you to consider participating in a research project that is trying to understand how the mind and brain function in healthy adults and children. Information we learn from you will help us to understand and maybe even cure learning difficulties and behavioral problems in families affected by neurodevelopmental disorders.

Our study is funded by the National Institutes of Health, which is the main US Government agency that provides money for research into medical disorders and the search for cures. As our study nears its end, we are recruiting individuals who carry the Fragile X premutation. Recruitment will continue through March 2013.

Where is the study?

  • The study will take place at University of California, Davis MIND Institute in Sacramento, California.
  • We will provide transportation and lodging, if necessary.

Who can participate?

  • Men aged 20-50 years old who carry the Fragile X premutation, and
  • Boys or girls aged 8-12 years old who carry the Fragile X premutation

What does the study involve?

  • One visit, which lasts 4-6 hours.
  • This visit includes a brief medical questionnaire, measurements of thinking, reasoning and other intellectual functions, measurements of balance and similar motor functions, an MRI scan of the brain, and blood draw.
  • MRI is a safe, radiation free way to measure the structure, connections and workings of the brain and you will be provided with brain images to keep.
  • We will also request your consent to obtain medical records from your health care provider. All personal health information will be protected and shared with nobody outside of the study.

What will I receive?

  • People who are selected for our study will receive a $60 check or gift card to thank then for their participation.

Who do I contact?

University of California, Davis MIND Institute
Y. Bella McLennan
Phone: (916) 703-0409
yamclennan@ucdavis.edu
2825 50th Street
Sacramento, CA 95817
mindinstitute.ucdavis.edu