Next Generation Gene Discovery in Familial Autism Study
Funded by the National Institute of Mental Health (NIMH)
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 seeking families with at least one child diagnosed with an autism spectrum disorder and one or more extended family members diagnosed with an autism spectrum disorder. Through this project, funded by the National Institute of Mental 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. If you are the primary caretaker of a child with an autism spectrum disorder, you will be asked to complete an additional phone interview about your child lasting about two and a half hours.
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 investigators involved in this project?
Zoran Brkanac, MD (principal investigator)
Ellen Wijsman, PhD (co-investigator)
Wendy Raskind, MD, PhD (co-investigator)
Raphael Bernier, PhD (co-investigator)
Katy Ankenman, LICSW (clinician/research coordinator)
Whom should I contact to get involved?
*Please note that we cannot guarantee the confidentiality of any information sent by email.
If you are interested in participating please feel free to contact:
Katy Ankenman, Research Coordinator
Toll free: 1-877-408-UWAC (8922)
UW Autism Center, BOX 357920, Seattle, WA 98195