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What are the SEED Follow-Up studies?

The earlier SEED studies of preschool children and the permission from many parents to contact the family about future research have allowed the study researchers to plan long-term follow-up studies of the SEED children. This follow-up research will allow us to learn more about service and treatment needs of families as children age and begin to understand similarities and differences between individuals with ASD and those without ASD as they age. To-date the SEED teams have planned two follow-up studies, SEED Teen and SEED Follow-Up study.


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 sites located in Georgia, Maryland, North Carolina, and Pennsylvania.

At the same time SEED 3 was enrolling families of preschoolers (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. SEED 1 children were ages 11 to 15 years old during that time and their parents were asked to complete two questionnaires about the child and the family. Results from that study are being evaluated now.

SEED Follow-Up study

“SEED Follow-up Studies will provide unique information about how having ASD or a developmental difference may impact the physical and psychosocial health of children, adolescents, young adults, and their families. We also hope to learn about differences in the healthcare and social services needs of children and young adults with ASD and developmental differences.”

Dr. Julie Daniels, UNC principal investigator 

SEED Follow-Up Study, which began in 2021, 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. Families from all 8 SEED sites (California, Colorado, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, Wisconsin) will be invited to participate in this new study. SEED children will be in various age groups during this study: some will be age 7 to 10 years; some will be 11 to 15 years old; and some will be 17 to 21 years old. Parents of the children will be asked to complete several questionnaires about their child and their family. The oldest SEED children might be asked to complete questionnaires about themselves as well.

NOTE: The North Carolina site at UNC-Chapel Hill is contacting SEED families from both North Carolina and Pennsylvania for participation in SEED Follow-Up study. The Georgia site at the CDC is contacting families from both Georgia and California sites for participation in SEED Follow-Up.

If you are a former SEED family, we hope you join us in this new research.

Contact Us: SEED Phone : 919-843-8190