Autism Genetics, Phase II: Increasing the Representation of Human Diversity
We are working with African American families to examine the development and genetics of autism, while also exploring the barriers that many families face while seeking an autism diagnosis and services for their children. Your family could be eligible to participate in our research study.
Fast Facts
Black & Black Biracial Children, Ages 18 Months - 18 Years
Diagnosed or Suspected Autism
Compensation up to $250
Conducted in St. Louis, MO
Study Background
We are hoping to help identify the barriers that Black families face during the process of getting a diagnosis and services for their children, while at the same time helping to identify the causes of autism.
Participation consists of a 30 minute phone call, completion of study questionnaires, and one or more sessions with study staff. Families come into our lab on the Washington University School of Medicine campus to participate in the study.
On average, participants can expect in-person study visits to last about six hours, depending on the number of family members participating. Interviews can be completed via telehealth, but diagnostic and developmental testing must be completed in-person. Transportation can be provided if needed. We also provide lunch for families on the day of their visit.
Your family may, or may not benefit from being in this study. However, we hope that in the future, other people might benefit from this study because what we will learn could help with better diagnoses, potential treatment, and potential prevention in understanding the autism spectrum disorder.
The National Institute of Mental Health (NIMH) is funding this research study. Families are paid for their participation in the study.
Study Background
We are hoping to help identify the barriers that Black families face during the process of getting a diagnosis and services for their children, while at the same time helping to identify the causes of autism.
Participation consists of a 30 minute phone call, completion of study questionnaires, and one or more sessions with study staff. Families come into our lab on the Washington University School of Medicine campus to participate in the study.
On average, participants can expect in-person study visits to last about six hours, depending on the number of family members participating. Interviews can be completed via telehealth, but diagnostic and developmental testing must be completed in-person. Transportation can be provided if needed. We also provide lunch for families on the day of their visit.
Your family may, or may not benefit from being in this study. However, we hope that in the future, other people might benefit from this study because what we will learn could help with better diagnoses, potential treatment, and potential prevention in understanding the autism spectrum disorder.
The National Institute of Mental Health (NIMH) is funding this research study. Families are paid for their participation in the study.
Additional Information
The purpose of our study is to help identify the genes that might be involved in autism, along with studying the environmental factors that contribute to a delay in diagnosis and barriers to quality care for Black children and families.
Your child may qualify for this study if they meet the following criteria.
Inclusion Criteria:
- Ages 18 months – 18 years
- Diagnosed with autism OR showing social and/or language delays
- Black or Black Biracial
- Have at least one biological parent available to participate
- Willing to submit a DNA sample
- Willing to travel to St. Louis, MO
- No previous participation in another genetic study for autism
- No diagnosis of other known genetic or neurological conditions
If your family is eligible to participate, your involvement in the study will include one to three in-person assessment visits and study questionnaires to be completed by you, and may include some phone interviews.
The in-person visit(s) will include a video-recorded, fully comprehensive evaluation with your child, including conducting developmental testing. We will collect blood or saliva samples from all participating family members (at least 1 biological parent, siblings, child suspected/ diagnosed ASD). Our nurse may complete a short non-invasive physical with your child, and we will ask you to do interviews about their medical history and medical history of the family.
We will do a series of interviews with you about your child’s communication, social skills, and behaviors, as well as an interview with you about the process of seeking a diagnosis and special services for your child. You will receive a summary of your child’s research evaluation that can be shared directly with your child’s pediatrician.
Yes, all participating families will be compensated for their time. You will also be compensated extra if you have more than one child with ASD participating in the study.
There is no cost for your family to participate in our research study.
