The genetic changes we study in TIGER3 have been connected with autism and developmental disabilities, but we are just beginning to learn how those changes might affect each person and family differently, and what effects might be shared versus unique across those genetic variants. By learning more about the shared and unique effects of these rare variants, we aim to contribute to (1) better understanding of co-occurring medical and behavioral conditions, and (2) development of individualized supports for affected individuals and their families.
What are the goals of the study?
In the TIGER research study, we are learning more about individuals with genetic events associated with autism spectrum disorder (ASD), intellectual disability (ID), and/or developmental delay (DD). We hope to better understand and describe how different gene changes influence the development, behavior, and experiences of children and adults. Individuals with these genetic changes may have neurodevelopmental differences that we would like to better understand.
What will happen during the visit or online?
Eligible families participate in a consent phone call, and are then invited to complete a series of video- or phone calls to assess for autism-associated features, adaptive skills, cognitive skills, and medical history. Caregivers are also invited to complete a variety of online questionnaires, including measures of adaptive behavior, treatment history, sleep habits, gastrointestinal symptoms, social-emotional functioning, and executive function. Biospecimen (blood or saliva) collection is completed remotely. Finally, families are offered a feedback session with a clinician and a written report of standardized measures and recommendations.
How will this help families?
Families will be compensated $100 for their participation. Participants may receive feedback about their family’s genetic event(s). Families will also receive written and/or verbal feedback regarding adaptive behavior, social communication skills, language skills, and cognitive skills as available from completed study activities.