What is “Autism & Beyond”?
Autism & Beyond is a ResearchKit study that aims to better understand young children’s emotions and behaviors using novel technology. The study runs on iPhones. The information that families send to Duke University researchers will be used to improve this technology and may help us develop new screening tools for developmental and mental health disorders.
Why did Duke University launch this app?
The long-term goals of the project are to increase access to childhood mental health screening, to make tools that are accessible to parents and educators, and to help target diagnostic evaluations toward the children who most need them.
How will my participation help research?
This study will test if it is possible to accurately capture information about emotion and attention in young children using the camera in an iPhone. Information you provide about your child may help researchers develop distance-based tools for screening young children for developmental and mental health disorders.
Who can participate in the study?
- You are 18 years old
- Your child is at least 1 year old and is not yet 6 years old.
- You are this child’s parent or legal guardian.
- You live in the United States of America
- You can read and understand English
Are you looking for certain people to participate?
No, all parents and caregivers who are eligible are encouraged to join! In order to better understand children, we need children from all backgrounds, including children with and without developmental delays. The more people who participate, the more we can learn about all children and the greater impact we can have on the lives of families in the future.
Can I participate if my child has a diagnosis of autism already?
Yes, we encourage families of children with autism to participate in order to help future children with autism.
If I participate will you tell me if my child has autism?
We cannot tell if children in the study have autism from the study activities. If you have concerns about your child’s development, you should discuss them with your healthcare provider. Our resources page has more information about autism and what to do if you have concerns about your child's development.
What will you tell me about my child?
If your child is 16-30 months old, the study activities will include the M-CHAT-R, a screening tool for autism. Your results will tell you if your child is at higher risk for autism and you will be able to save these results to share with your healthcare provider. Your results will not tell you if your child has autism.
All participants who answer the Duke temper tantrums screen will receive results about whether their child has temper tantrums more frequently than other children.
The video surveys will not give you a result. These tasks are still experimental and the study seeks to learn how children’s responses to these videos relate to the information you provide. With your help, we hope this data will allow us to develop new screening tools and to better understand children.
What is a screening tool?
A screening tool identifies children at higher risk of a disorder who might benefit from further testing. They are used to narrow down the number of children who need additional testing, but a screening tool is not the same as a diagnostic test. For example, some children who screen at medium or high risk for autism do not have autism, or have a different disorder.
How long will it take to participate in the study?
We ask you to take 2-30 minutes to complete the video activities and survey activities. We understand as a parent, your spare time is limited. The activities can be done all at once or at separate times. The videos are each 20-30 seconds long. It will take you about 20 minutes to complete all of the surveys. We will ask you to complete one of the surveys again one week and one month later, and the others three months, and six months after you first completed them so we can understand how your child develops over time.
Can I enroll more than one child in the study?
We currently can only let you enroll one child with your account. Please choose one child to enroll in the study for now, in the future we will add the option of enrolling multiple children.
What if my child turns 6 years old during the study?
They can continue to participate as long as you started the study before they turned 6.
Who will see the videos of my child?
Only study staff will have access to the videos. All persons who have access to research data at Duke University must undergo training in ethical practices and confidentiality. Study data does not go to any partners outside of Duke University.
Who owns the data about my child?
What information will be shared with Apple?
All of the data is uploaded directly to Duke University servers and is not sent to Apple. Apple does not have access to any data collected by ResearchKit Apps.
Will my information be kept confidential?
Yes, study records that identify you or your child will be kept confidential as required by law. The information will be stored in a password-protected network computer location on a server at Duke, and access to the information will be restricted to the research personnel. The data will be used only for research at Duke. Study data will never be shared or sold to any third party.
What happens if I change my mind about the study?
Like all research studies, you can choose to stop participating in a study at any time.
If you and your child agree to be in the study, you and your child may withdraw from the study at any time. To withdraw from the study, you can select “Leave Study” on the profile tab in the app. We will retain any data already collected in the study before you withdrew. You can also request, via an email to firstname.lastname@example.org, that the researchers delete any of the video observation data on your child that has already collected as part of study
Will I be contacted by phone or e-mail?
The demographics survey will ask you whether you want to be contacted by phone or e-mail. If you answer yes to this question, we may contact you for future studies or follow up questions.
Will this app use my data plan?
The app does make use of data. We encourage you to use it while on a wifi network to avoid using up your data plan.
Where do I go for technical support?
For technical support, please see Questions, Feedback, and Support. On this page, we have included a list of technical issues we are currently addressing.