IAN/Washington University Mothers- and Grandmothers-to-be Project
Reference Number: 201508067
WHAT IS THE PURPOSE OF THE STUDY?
The purpose of this study is to measure the transmission of autistic traits within multiple generations of families with an individual affected with Autism Spectrum disorder.
WHO IS NEEDED?
Biological mothers of children with ASD who are now biological grandmothers or expecting biological grandchildren in the near future. Grandmother must have recently spent 6 hours per month with her biological grandchild(ren) to participate.
WHAT IS INVOLVED IF I PARTICIPATE?
Duration: Grandmothers will complete a 15-minute "Family History and Demographics Questionnaire" over the phone with a member of the research team. Grandmothers will receive questionnaires by mail, which will consist of an age-appropriate version of the Social Responsiveness Questionnaire, a questionnaire about an individual's social behavior. Each mailed questionnaire will take 10-15 minutes; total expected time for a single grandchild is 75 minutes. Each additional grandchild is expected to require less time ranging from 15 minutes for a sibling to 45 minutes for a cousin.
Tests/Procedures: Grandmothers will complete a Family History & Demographics Questionnaire over the phone. Then, grandmothers will receive age-appropriate versions of the SRS questionnaire by mail to complete on the following family members: 1) their child most severely affected with ASD; 2) their other biological children; and 3) their biological grandchild(ren). Grandmothers will be asked to return completed questionnaires in the provided self-addressed stamped envelope.
Risks: Participants may experience discomfort while answering some questions. Participants may choose not to answer any question which makes them uncomfortable and will have the option to terminate the online session at any time. One risk of participating in the study is that confidential information about you may be accidentally disclosed. We will use our best efforts to keep the information about you secure.
Benefits: You will not benefit from being in this study. However, we hope that, in the future, other people might benefit from this study, because the knowledge gained will inform better ways to predict the risk of ASD.
Compensation: You will be paid a Target gift card of $15 for every questionnaire completed.
WHO IS THE PRINCIPAL INVESTIGATOR (DOCTOR)?
Natasha Marrus, MD, PhD
WHERE WILL THE STUDY TAKE PLACE?
Washington University School of Medicine