How to Participate in Research Studies

Demonstration of participants in our study

Who can participate in our research studies?

  • Families with children who fall into one of the following categories:
    • Have been diagnosed with Autism Spectrum Disorder with a developmental delay (i.e. cognitive delay) – 3 years or younger
    • Have been diagnosed with fragile X syndrome or FMR1 premutation – 5 years old or younger
    • Have been diagnosed with Down Syndrome – 12 months old or younger
    • Have an older sibling diagnosed with Autism – 12 months old or younger
    • Are typically developing children – 12 months old or younger
    • Families who are expecting the birth of a child who may fit any of these criteria

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 Preschool 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.

Other Research Participation Opportunities at USC

There are additional research participation opportunities in the lab of Dr. Jessie Klusek, Assistant Professor in the Department of Communication Sciences and Disorders. Dr. Klusek is currently recruiting for the following two studies:

Mother study: Participation typically takes about 3 hours and involves completing some interviews and questionnaires.

  • Mothers who have a son or daughter with fragile X syndrome
  • Women who are fragile X carriers (i.e., carriers of the FMR1 premutation)
  • Mothers who have a son or daughter with autism spectrum disorder
  • Mothers who have typically developing sons or daughters

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.

  • Boys with fragile X syndrome, 16-22 years old
  • Girls with fragile X syndrome, 16-22 years old

Interested parties should contact Dr. Jessie Klusek by email ( or phone (803) 777-5049. More information can be found on the SC Family study website:

Learn how you can take part in our research