Current Research Studies
Study: Down Syndrome Phenotype Project
We are recruiting families for a research project designed to identify the genetic and medical factors affecting cognition and language in individuals between the ages of 11 and 25 years who have Down syndrome. Participation would require visiting the MIND Institute on the Sacramento campus of the University of California, Davis to participate in a cognitive assessment, answering questionnaires over the phone about your family, and providing a saliva sample, a small blood sample from your son/daughter, and access to some health records. The costs for eligible travel expenses will be reimbursed by the project according to University policies. We will ask families to return for follow-up assessments approximately 3 months after their first visit. For more information and to find out if your child is eligible, contact our Program Coordinators, Lauren Bullard, Lea Carollo, and Alicia Cox, by email (email@example.com) or telephone (916-703-0226).This project is a collaboration with researchers at Johns Hopkins University, University of Arizona, Oregon Health and Sciences University, and Emory University. This research is approved by the University of California, Davis Institutional Review Board for the Protection of Human Participants.
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.
Study: Expressive Languauge Sampling in Down Syndrome or Fragile X Syndrome
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 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.
If you would like to learn more about this study, please call the Study Coordinator at 916/ 703-0226 or email: firstname.lastname@example.org.