PI (Component A): Carolyn DiGuiseppi, MD, PhD
PI (Component B): Cordelia Robinson Rosenberg, PhD, RN
Other participating personnel: Brian Be, Tessa Crume, Sandra Friedman, Kristina Hightshoe. Nuri Reyes, Ann Reynolds, Steve Rosenberg, Jessica Sanders, Sarah Schmiege, and Christine Cook
Component A – Enhanced Epidemiologic Research and Participant Follow-Up Surveys: The study will continue the work of previous SEED studies. Families enrolled in SEED Phases 1-3 will be contacted to answer questions about genetic, prenatal, early-life and family factors that contribute to autism spectrum disorder (ASD). The study will also look at differences and similarities in the behaviors, abilities, and health of young children with ASD. It will also provide insights into the experiences of adolescents with ASD as they mature through adolescence and into adulthood. The grant for Component A will run from July 2021 – June 2026.
Component B – In-Person Assessment of Intellectual Abilities of SEED Participants: The purpose of this study is to gain knowledge about the functioning of individuals with ASD through follow-up assessments of SEED 1-3 participants. This study will evaluate the reliability of childhood measures of intellectual status by comparing SEED participants’ current functioning (aged 8 to 22) with their abilities when they were preschoolers. These data will be used to examine factors that affect the stability of intellectual status, and its ability to predict transition outcomes. The grant for Component B will run from July 2021 – June 2025.
Parents of all children who take part in the in-person assessment of cognitive abilities will receive feedback letters that explain the results of relevant developmental assessments that were administered to their child. The feedback letter will describe each assessment that was administered, provide scores for each assessment, and offer a general interpretation of the scores. The letter will also include contact information for a study clinician if the parent has additional questions that are not answered in the feedback letter. A list of community referral resources will also be provided so that parents can schedule further developmental evaluation if desired.
Announcements may be made to the general public at key junctures in SEED Follow-up Studies, for example, when recruitment begins, when recruitment ends, and when study results are available. These announcements may include press releases as well as other types of announcements such as CDC and/or individual site web announcements and direct announcements to key stakeholders and advocacy groups.
The findings from analyses of SEED Follow-up Studies data will be published in peer-reviewed journals and presented at scientific, stakeholder, and public community conferences and meetings. Data will be presented in aggregate in a manner that preserves participant confidentiality.
Study participants will be kept informed of study progress and results through periodic SEED newsletters. Some participants may ask not to be kept on the site’s SEED newsletter mailing list. We will honor all such requests.