Yes! Although we invite and encourage both parents to participate, only one biological parent is required.

No, we don’t ask participants for any form of insurance.

We seek children who are of Black/African descent with suspected ASD or a community diagnosis of ASD, including Afro-Caribbean, Afro-Latino and Bi-racial Black people. If your child is Black, or multiracial including Black/African ancestry, then you and your child can participate even if you are not Black.

Individuals aged 3 years and up are eligible to join our study. However, we also require participation from at least one biological parent.

We focus specifically on African Americans because their ASD presentation is different from other racial groups. African Americans are often diagnosed later in life and tend to have more severe symptoms. At a group level, intellectual disability is more common in African Americans with autism than in Caucasians with autism. We want to know whether the differences in autism symptoms and rates of intellectual disability are caused by lack of access to prompt and effective care, or whether there are biological differences between African Americans and Caucasians that contribute to different autism symptoms.

Our study offers · a feedback letter from UCLA’s clinical team, which describes the tests we performed and our findings · suggestions on next steps, such as contacting your regional center for further evaluation and access to services · a list of community resources for general support, · periodic communications about our study results, other findings in the field of autism research and treatment, As an observational research study, we are unable to provide treatment, interventions, or referrals to service providers.

We need Black families to participate in medical and genetic research to understand and address racial differences in frequency of diseases, including autism. You’ll receive a feedback letter confirming whether you currently meet criteria for autism spectrum disorder

For in-person participation, children with diagnosed or suspected ASD will be administered the ADOS-2 to confirm their diagnosis. Our main cognitive measure is the Differential Abilities Scale II (DAS-II), but the Ravens-2 and Peabody Picture Vocabulary Test (PPVT) may be administered depending on the child’s age and abilities. If additional information is needed to make a confident diagnosis, the parent will also be asked to complete the Autism Diagnostic Interview, Revised (ADI-R). For remote participation via video conference, children with diagnosed or suspected ASD will be administered the Childhood Autism Rating Scale 2 (observation version), Ravens-2, and Peabody Picture Vocabulary Test (PPVT). If additional information is needed to make a confident diagnosis, the parent will also be asked to complete the Autism Diagnostic Interview, Revised (ADI-R). Parents and siblings of the person with autism will be asked to complete the Ravens-2 and Peabody Picture Vocabulary Test (PPVT) for both in-person and remote participation.

Your participation in the study is voluntary. You can decline to answer any questions, and you can end your participation at any time.

Yes, if it wasn’t a genetics study on autism. Previous participants of SPARK are not eligible for our study.

We ask you to donate a small amount of blood or saliva, A biomaterial sample for our study is blood or saliva. This is where we get your genetic material). Your sample will be labeled with a code. The genetic research team will know your code, but not your name or contact information. Our genetics team only works with “coded” or “de-identified” samples/data.

Since this is a genetic study, you must donate a genetic material (blood or saliva) to participate.

The blood is used as a source of DNA which is used for whole-exome or whole-genome sequencing and/or genome-wide SNP genotyping. We also obtain RNA from blood, which is used for gene expression studies, to look at what genes are turned on or off.

We purify DNA from the saliva and use it to look for changes in the DNA that may be associated with autism. DNA from blood will be sent to a biobank supervised by the National Institutes of Health (NIH) and may be shared with other qualified autism researchers; this sharing is required as part of our research funding. DNA from saliva is reserved for use by UCLA team members and other researchers who are part of our project. Instead of running tests for specific changes in specific genes, as is often done through clinical genetic testing, our current technology looks for any changes in the DNA in the parts of the genome that encode proteins (whole-exome sequencing). We then accumulate information from many individuals and many families to build statistical evidence for whether a given change in the DNA is associated with autism or autism-related traits more often than is expected by chance. DNA from whole blood undergoes the same testing but is stored in the NIH repository and made available to qualified researchers, who must apply for it, describe their research, and demonstrate their qualifications. RNA from whole blood is retained at UCLA for use by our research group only to study which genes are turned on/off (gene expression).

Blood is preferred; however, saliva is accepted. We ask families to donate blood whenever possible because it contains more genetic information than saliva.

The study takes about 6 hours to complete, broken up into multiple sessions. The 6 hours will consist of a few one-hour phone calls, 2½ hours of assessments with a member of our clinical team, and 30 minutes on your own to complete questionnaires.

Visits to UCLA campus will take approximately 3 hours, for assessments and a blood draw. We will provide a campus parking pass for Saturdays, on weekdays, you can turn in your parking receipt for cash reimbursement.

Yes! Questionnaires are always completed on your own. We also offer appointments with our clinical team on select Saturdays, 3-4 times per year.

Only the study coordinator and clinical research team will know your name and contact information. The genetic research team and other qualified researchers will have access to your study data, but it will be labeled with an ID code instead of your name, and there is no way for the genetic research team to connect your coded study data with your name or contact information.

If you tell the study team you don’t want to participate any more, we will stop asking for your information. However, we may continue using the information and/or biomaterial you’ve already shared with us. Upon request, we’ll also destroy all information we have about you; just ask the study team in writing (e-mail or text is fine). However, we can’t guarantee that your genetic data will be destroyed from all possible files and backups. We also can’t get back or delete any data that has already been shared with other qualified researchers.

We keep your personal information private by: 1. Conducting all assessments in private 2. Labeling your behavioral assessment data and DNA/RNA with an ID code instead of your name, birthdate, or other personal information 3. Keeping the code key linking your identity to your assessment data stored in a locked office and on encrypted computers 4. Adhering to all standards set by the UCLA Office of Human Research Protection Program (OHRPP)

Payment for completing all elements of the study is given as an Amazon gift card (minimum $250). Cash may be available for some participants who finish all elements of the study, including donating a blood sample, at an in-person visit.

No. This is a research study, and federal law prevents us from returning genetic testing results to you from our research study.

After participation, parents are provided a feedback letter that offers a summary of behavior observations, Autism Diagnostic Interview-Revised, CARS-2 ST, Ravens, PPVT, Social Responsiveness Scale (SRS-2) and Vineland. Also, there will be a Testing Data Appendix that includes a standard score, percentile, classification, and age equivalent for all assessments.