Extended Family Study
Funded by the National Institutes of Health, Autism Center of Excellence
What is the purpose of this study?
Researchers at the University of Washington are aiming to learn more about the genetic basis of autism. Armed with a better understanding of what genes are involved in autism, we can develop more effective early detection methods and targeted interventions for individuals with autism.
To answer these complicated questions, we are following up and meeting with extended family members (e.g. grandparents, cousins, aunts and uncles) of the families that participated in our Family Study of Autism, and new families with multiple members diagnosed with ASD.
Through this project, funded by the National Institutes of Health, we hope to identify the genes that play a role in autism.
What does participation in the study mean?
Participation in the study includes a phone call to determine if this study is a good match for your family, completion of several questionnaires, and a visit with UW Autism Center research staff. During the visit you will participate in tabletop testing that will examine cognitive and neuropsychological abilities, such as your ability to remember faces, complete puzzles, and define words. You will also be interviewed by research staff regarding your interests, such as how you like to arrange your physical space and spend your free time. Additionally, we will collect a blood sample from each participant.
What is the time commitment for participation in the study?
If you choose to participate in this study, you will be asked to complete several questionnaires, respond to a number of questions over the phone and participate in one visit with UW Autism Center research staff. The questionnaires and phone call will take approximately one hour to complete, and we will ask that you schedule 2 hours for your visit with Autism Center research staff.
What will my family get out of the study?
By participating in this study you will be helping to advance our understanding of the genetics associated with autism. This will aid research in developing methods of early detection and treatment of autism spectrum disorders.
What are the risks to participating in this study and what safeguards are in place to minimize any risks?
There are no known risks associated with the tasks used in the study. This study has been approved by the University of Washington Human Subjects Review Committee. All information collected as part of this study is kept strictly confidential and all collected medical information is kept separate from identifying information in our highly secure, encrypted, and protected database.
Who are the researchers involved in this project?
Ellen Wijsman, PhD (principal investigator)
Wendy Raskind, PhD,MD (co-investigator)
Raphael Bernier, PhD (co-investigator)
Sara Webb, PhD (co-investigator)
Annette Estes, PhD (co-investigator)
Zoran Brkanac, MD (co-investigator)
Katy Ankenman, LICSW (clinician/research coordinator)
Whom should I contact to get involved?
If you are interested in participating, please feel free to contact
Katy Ankenman, Research Coordinator
Toll free: 1-877-408-UWAC (8922)
*Please remember we cannot guarantee the confidentiality of any information sent by email.