Study: Parent Implemented Spoken Language Intervention

Contact: Lauren Bullard, at 916-703-0484 for more information about this study.

We are recruiting  mothers and their sons with fragile X syndrome, between the ages of 10‐ and  17‐years, to participate in a pilot study of a parent‐implemented spoken language intervention.  The goal of this project is to teach each mother strategies which can be used to support their son’s spoken language.

The study will involve 2 visits to the MIND Institute (located in Sacramento, California) and 13 weekly language intervention sessions.  In this phase of the study, half of the families who decide to participate will go into a Treatment Group and half will go into a Wait-List Group.  If you are in the Treatment Group, you will visit the MIND Institute 2 times and will receive 13 weekly intervention sessions.  The weekly intervention sessions will be conducted by a speech/language pathologist via distance video‐teleconferencing using SKYPE.

If you are in the Wait-List Group, you will visit the MIND Institute 2 times, but we will follow your son for three months without treatment.  You will then have the option of continuing into the next phase of the study, which will involve the spoken language intervention combined with a drug.

Compensation for travel‐related expenses will be provided in accordance with UC Davis policies. A laptop computer equipped with video‐teleconferencing software will also be loaned to each family for the duration of the project. The project is directed by Drs. Randi Hagerman and Leonard Abbeduto and has been approved by the UC Davis Institutional Review Board (IRB Protocol 520144).

Study: Language Development in Fragile X Syndrome and Autism Spectrum Disorder

Researchers at the University of California, Davis MIND Institute want to learn more about the language difficulties and differences of individuals with fragile X syndrome and autism.

Would the study be a good fit for me?

This study might be a good fit for you if:

  • You are the biological mother of a son with fragile X or autism
  • You and your son’s native language is English
  • Your son with fragile X or autism is between 15 and 21 years old
  • Your son uses spoken language as his primary means of communication and uses phrases of 3 words or longer

What would happen if we took part in the study?

Your son would:

  • Take part in four annual assessments
  • Each annual assessment would include language and cognitive testing of approximately 5 hours a day for 2 consecutive days with lunch and breaks as needed
  • Give saliva samples for cortisol / anxiety measures
  • Receive a one-time only blood draw for fragile X participants

As his mother, you would:

  • Complete approximately 1 hour of cognitive testing
  • Take part in interviews
  • Fill out questionnaires

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. Information will be shared between the sites. This research is approved by a University of California, Davis Institutional Review Board for the Protection of Human Participants.

Sign-up up for this research study »

Study: Expressive Language Sampling in Down Syndrome or Fragile X Syndrome

Contact: Alicia Cox, at 916-703-0226 for more information about this study.

If you have a son or daughter with Down syndrome or 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 she/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 she/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.