Who can participate in research studies of ours?
- Families with children 5 years old and below who fall into one of the following categories:
- Have been diagnosed with Autism Spectrum Disorder with a developmental delay (i.e. cognitive delay)
- Have been diagnosed with fragile X syndrome or FMR1 premutation
- Have been diagnosed with Down Syndrome
- Have an older sibling diagnosed with Autism
- Are typically developing children
- Families who are expecting the birth of a child who may fit any of these criteria
- Mothers who have a typically developing child, a child with autism or a child with fragile X syndrome
- Males with fragile X syndrome or autism between the ages of 14-22.
Participants are compensated for their time. Please contact us by email or by phone at (803) 777-5676 if you have questions or are interested in participating.
How Will Participation Help Families?
Following each visit, you will receive a brief written report of your child’s development. You will have a chance to share your concerns and feelings about your child and family, and we will provide referrals to community services at your request. In addition, families will be given a small amount of money to offset expenses that may occur by participating. Ultimately, we hope our results will help all families affected by developmental disorders by promoting earlier diagnosis, treatment, and support.
What Does Participation Involve?
Infant and Pre-school studies: Participation involves assessments of your child’s developmental skills, as well as interviews with you, the parent(s), regarding your own experiences and perceptions of your child’s development as well as your own well-being. If you agree to be in the study, we will email rating scales and forms to you which will take approximately 1 ½ hours to complete, and we will schedule a face-to-face assessment with you and your child that varies in time from 2 hours – 8 hours depending on the age of the child. Most research assessments take place in the home at a time convenient to the family.
Families have the option to participate in electroencephalogram (EEG) and magnetic resonance imaging (MRI) testing at our local testing facility, The Institute for Mind and Brain. The EEG test measures neural processing when participants are presented with neutral and social stimuli. Heart rate, eye movement and brain waves are recorded while child participants watch images on a television screen. The presentation takes about 20 minutes with the entire session lasting about an hour.
The newest component of our infant/preschool assessments involve collecting small blood samples to analyze genetic components using cutting edge technology. Mothers and children currently enrolled in our studies can opt to schedule ONE TIME blood draws to assist us in this endeavor. We offer additional compensation for these optional components and we make participating as convenient as possible.
Adolescent language study: Participation involves a day and a half of activities on the campus of the University of South Carolina. These assessments occur annually for four years. All individuals participating will complete tasks, rating scales, and interviews at each assessment point that measure language, psychological, and behavioral skills. Mothers will also be asked to participate by completing rating scales and interviews.
Mother study: Participation typically takes about 3 hours and involves completing some interviews and questionnaires.