What is the purpose of this study?

The Simons Simplex Collection (SSC) project is a new initiative to search for the causes of autism. Earlier research efforts studied multiplex families, or families with more than one child with autism. The current study is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

How can I participate? What are the criteria? Your family can participate if: You have only one child with an autism spectrum disorder (ASD), age four or older, You have additional child(ren) without ASD, age four or older, and Both biological parents are willing to participate.

What does participation in the study mean?

Participation in the study includes two phone calls to determine if this study is a good fit for your family, completion of several questionnaires about your children (both the child with an ASD and the one(s) without) and both parents, and a visit to the UW Autism Center on the UW Medical Center campus. The visit to the Autism Center will include diagnostic, cognitive, and language assessments for your child with an ASD and interviews with one parent. Additionally, we will collect photos, measurements, and a blood sample from your children and both parents.

What is the time commitment for participation in the study?

If you choose to participate in this study, you will be asked to respond to a number of questions over the phone, complete several questionnaires, and participate in a visit to the UW Autism Center. The phone calls will last approximately 2 hours, the questionnaires will take approximately 2 hours to complete, and we will ask that you schedule 3 hours for your visit to the Autism Center.

What will my family get out of the study?

Your child with an ASD will receive a behavioral assessment free of charge. We will also provide parents with oral feedback and a brief, written report regarding their child’s assessment results. Participants will be compensated for parking. In addition, for completing the phone calls, questionnaires, and visit, families will be provided an honorarium as a thank you for their contribution. Families consisting of four participating members will be provided with an honorarium of $250, and families consisting of three participating members will be provided with an honorarium of $200. Families will also be making an important scientific contribution to understanding more about the genetic basis of different forms of autism. Although autism does tend to run in families more often than would be expected by chance alone, in most cases children with an ASD have no other relatives with an ASD. Therefore, by participating in this study, families will help advance our understanding and potential treatment methods for the most common form of autism.

What are the risks to participating in this study and what safeguards are in place to minimize any risks? The study has been approved by the University of Washington Human Subjects Review Committee. All researchers working on this study are very experienced in working with families and children with autism. You may feel some pain associated with having blood drawn through a vein. You may experience discomfort, bruising, and/or other bleeding at the site where the needle is inserted. Sometimes people get dizzy or feel faint when their blood is drawn. Blood draws are completed by trained phlebotomists at the University of Washington Medical Center.

Who are the investigators involved in this project?

The members of the University of Washington research team involved in this project are:
Raphael Bernier, Ph.D.
Ellen Wijsman, Ph.D.
Jennifer Varley
Kate Stamper

Additionally, the project involves autism researchers at 12 other academic institutions throughout North America.

Whom should I contact to get involved?

To learn more about any of our studies, please contact our Project Scheduler at our toll-free number: 1-800-994-9701

University of Washington
Simons Simplex Collection Project
Box 357920, Seattle, WA 98195
phone: 1-800-994-9701
email: ddrinfo@u.washington.edu
Additional SSC information available at: https://sfari.org/sfari-simplex-collection

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