Posted at June 12, 2013 | Categories : Opportunities for families | 6 Comments

Study on Spoken Language in Children, Adolescents, and Young Adults with Fragile X Syndrome

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of MIND Institute University of California, Davis. 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.

UC Davis MIND Institute - SquareIf you have a son or daughter with fragile X syndrome between 6 and 23 years of age, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the MIND Institute University of California, Davis, and four other sites across the United States.

The goal of this study is to learn more about how samples of spoken language can be used to measure change over time in the spoken language, problem solving, and behavior of individuals with genetic syndromes. In the future, it is possible that measures of spoken language production may be useful as one way to learn whether different drugs can help individuals with genetic syndromes to learn and use language more effectively.

If you decide that you and your son or daughter would like to be in this study, we will ask you to visit one of the study sites three times over two years in time. At each visit, we will collect a sample of your son or daughter’s speech as s/he interacts with an examiner in three different settings: a conversation, looking at a picture book, and participating in a series of interactive activities with an examiner. We will also give your child some tests that will measure his/her problem solving skills and how much language s/he understands and produces. We will ask you to fill out some questionnaires and participate in an interview about your child’s everyday living skills.

Study on Language Development in Fragile X Syndrome

If you have a son with fragile X syndrome or a son with autism between 15 and 22 years of age, you and your son are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the MIND Institute University of California, Davis. The project is a collaborative effort with researchers at the University of South Carolina and at the New York State Institute for Basic Research on Developmental Disabilities.

The goals of this study are to learn more about the language development of individuals during the transition period from adolescence to adulthood, to identify language differences between individuals with fragile X syndrome and those with an autism spectrum disorder, and to learn about how language impacts adult outcomes. We will also ask the biological mothers to participate through interviews and the completion of a short assessment to measure problem solving skills.

If you decide that you and your son would like to be in this study, we will ask that you visit the MIND Institute of the University of California, Davis in Sacramento or the University of South Carolina in Columbia four times over the next four years. The costs for eligible travel expenses, including hotel and airfare, will be covered by the project.

If you would like to learn more about either of these studies, please call the Study Coordinator at (916) 703-0226 or email: language.research@ucdmc.ucdavis.edu.

This research is approved by a University of California, Davis Institutional Review Board for the Protection of Human Participants.

Study 1: IRB Approval ID: 403210-3

Study 2: IRB Approval ID: 260517-11