Frequently Asked Questions
SEED stands for the Study to Explore Early Development. SEED is a multi-year, multi-state research study to compare preschool children with autism and other developmental delays to children from the general population. SEED is funded by the Centers for Disease Control and Prevention (CDC) as part of the Center for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. This network is composed of six research sites across the country. The North Carolina site is located at UNC Chapel Hill.
The first phase of this study (SEED 1) began in 2006. Together, six sites enrolled over 3700 children, age 2 1/2 to 5 years old. The second phase (SEED 2) began in 2012 and enrolled an additional 3300 children. During the first and second phases of SEED, the participating sites were in California, Colorado, Georgia, Maryland, North Carolina and Pennsylvania. SEED 3 began in 2016. During the third phase of SEED, two sites left the group and two new sites joined. For SEED 3, the other participating sites were in Colorado, Georgia, Maryland, Missouri, North Carolina and Wisconsin. Together these sites enrolled approximately 2000 children. SEED researchers now have information from about 9000 children and their families.
Results from SEED will help researchers better understand the health and behavior of young children with autism and to identify factors that contribute to autism and other developmental issues.
At the same time SEED 3 was enrolling families during 2016 to 2020, staff at the Georgia and North Carolina sites were also contacting families who had participated in SEED 1 from four of the original sites to collect updated health and development information about SEED 1 children and their families. This study was called SEED Teen.
SEED Teen was a collaboration between CDC and the University of North Carolina at Chapel Hill with assistance from Johns Hopkins University and Children’s Hospital of Philadelphia and included families from four SEED 1 sites located in Georgia, Maryland, North Carolina, and Pennsylvania. Results from that study are being evaluated now.
A new follow-up study, SEED Follow-Up Study, began in 2021 that will continue to follow up with SEED 1 families as the children become young adults and will begin to follow up with the children from SEED 2 and SEED 3. The North Carolina site at UNC-Chapel Hill is contacting SEED families from both North Carolina SEED and Pennsylvania SEED for participation in the new SEED Follow-Up study. The Georgia SEED site at the Center for Disease Control (CDC) is contacting families from both Georgia and California. The Colorado, Maryland, Missouri, and Wisconsin sites will contact their SEED families. The SEED Follow-Up Study may lead to better services and treatments for families and their school age or young adult children with autism and other developmental delays. The studies will also help us understand similarities and differences between individuals with autism and individuals without autism as they age.
Families who participated in any of the Study to Explore Early Development (SEED) studies in the past are being asked to be part of the SEED Follow-Up study. The North Carolina site at UNC-Chapel Hill is contacting SEED families from both North Carolina SEED and Pennsylvania SEED for participation in the new SEED Follow-Up study. The Georgia SEED site at the Centers for Disease Control and Prevention (CDC) is contacting families from both Georgia and California. The Colorado, Maryland, Missouri, and Wisconsin sites will contact their SEED families.
We are only contacting families who previously consented for us to contact them to discuss future research.
We are enrolling families of children with and without ASD or other developmental disabilities. It is important that different types of families participate. This will help us understand the full range of health and developmental issues children and their families face as children age and become adults.
- You will be asked to complete several surveys. All study activities are completely voluntary.
- The activities include completing several surveys about your child. The CDC and their partners will contact families to complete the surveys with a primary caregiver. The surveys can be completed online via a personalized weblink, on paper via a mailed packet, or by phone via an appointment with the CDC data collection partners.
- Some families or their children might be asked to do additional surveys or assessments.
There is no personal benefit to you for taking part in the study. Your participation will help us better understand health and development of children and young adults. The study may help us learn more about ASD and other developmental disabilities. Results may lead to better services for children and young adults with developmental disabilities and their families.
There are not cost to you associated with the study.
To thank you for your participation, you will receive a $30 gift card if you complete the surveys.
If you are asked to complete additional study activities, there will be additional compensation for completing those. The additional activities and incentive/compensation will be explained if you are asked to do additional activities.
No, this study does not include any type of medical treatment, intervention, or medication. We will be studying the characteristics of children and families to learn more about the causes of autism and other developmental delays. This may lead to better services and treatments for children and young adults with developmental issues.
Results from SEED 1, SEED 2, and SEED 3 and SEED Teen are being published now. You can see some of those results on our website.
Results from the SEED Follow-Up study will be released to the public as soon as they become available and data are analyzed. Because the study involves so many families, we will be collecting data from 2022 through 2026. After that time, the data will need to be analyzed. Once data analysis has been completed, the results will be reported. Some analyses may be conducted before the study data collection is over and those results could be released earlier.
Newsletters will be available bi-annually on the study website. You can view the newsletters here https://ncseed.org/seed-newsletters/ . These newsletters note general study progress, announce any publications of research results from earlier waves of the study and provide helpful parenting information.
The Centers for Disease Control and Prevention has received a Certificate of Confidentiality which guarantees that any information collected that could identify you or your family will be used only for this study. Your information cannot be given to anyone else unless you give your written consent or unless otherwise required by law. In addition, each site must follow security and confidentiality regulations set up by the federal government and the local Human Subjects Protections Committees.
Routine questions about participating, explanation of procedures, or similar matters about SEED Follow-Up study should be addressed to your SEED site of origin. For North Carolina SEED or Pennsylvania SEED participants, you can use the NC SEED Helpline 919-843-8190 or email at SEED@unc.edu.
For help completing your surveys, contact the CDC data collection partners at TBD. If you are a participant in a study with the University of North Carolina at Chapel Hill and have questions or concerns about your rights as a research participant you may contact, anonymously if you wish, the Office of Human Research Ethics by calling 919.966.3113 or by email at IRB_Subjects@unc.edu.
Your child’s doctor is the best person to discuss your child’s development with you.
For this phase of SEED:
UNC will be the primary contact for former North Carolina and Pennsylvania SEED families in order to ask them if they would like to participate in this phase of the study. If the families agree to allow the CDC data collection partners to call them about this follow-up study, their name and phone numbers and/or email will be provided to the CDC data collection partners, Chickasaw Nation Industries (CNI).
UNC contact: Assistant Project Manager; 919-843-8190; email@example.com
CDC’s data collection partners, Chickasaw Nation Industries (CNI), will be the primary contact for families in order to schedule study activities and for help with completing the surveys.
Chickasaw Nation Industries (CNI) contact: COMING SOON