Who:
The University of Washington Autism Center (UWAC)
Purpose:
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.
Description of study:
The SFARI Simplex Collection (SSC) is a core project and resource of the Simons Foundation Autism Research Initiative (SFARI). The primary goal of the SSC is to establish a permanent repository of genetic samples from approximately 3,000 families, each of which has one child affected with an Autism Spectrum Disorder (ASD) and parents unaffected with ASD.Each genetic sample will have an associated collection of data that provides a precise characterization of the individual (phenotype). Rigorous phenotyping will maximize the value of the resource for a wide variety of future research projects into the causes and mechanisms of autism.
For full description of this study, please see the following web site : https://sfari.org/sfari-initiatives/simons-simplex-collection
Inclusion criteria:
Your family may 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.
Exclusion criteria:
none known
Participation:
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 UW 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 two hours, the questionnaires will take approximately two hours to complete, and we will ask that you schedule three hours for your visit to the UW 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.
Principal Investigator(s) :
The members of the University of Washington research team involved in this project are:
- Raphe Bernier, Principal Investigator
- Emily Champoux, Project Coordinator
- Tracey Ward, Intake Coordinator
- Kelly Johnson, PhD, Psychologist
- Katy Ankenman, MSW, Clinician
- Beau Reilly, Postdoctoral Fellow
- Jen Gerdts, MS, Graduate Research Assistant
- Kate Stamper, Graduate Research Assistant
- Jeff Munson, PhD, Data Management
- Madhu Ghadapalli, Data Management
- Victor DelaMerced, Data Management
- Debi Hertel, Data Management
- Logan Vincent, Medical Student
Additionally, the project involves autism researchers at 12 other academic institutions throughout North America.
Location(s) :
University of Washington Simons Simplex Collection Project Box 357920 Seattle, WA 98195Contact Details :
1.800.994.9701
ddrinfo@u.washington.edu
Known Funding Sources :
Funded by The Simons Foundation
Privacy Notice:
Not available at the time of publishing
