The Simons Simplex Collection

FAQs

• What is the purpose of this study?
• Who will be studied?
• What will the study require?
• What is the time commitment?
• What are the benefits of being in this study to my family?
• Could my child be in this study?
• What safeguards are in place to ensure that the study is conducted ethically and the children who participate in the study are not harmed in any way?
• Who is funding the study?
• What other universities are conducting this study in conjunction with Yale?
• Who is involved at Yale?
• How can I get further information?

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What is the purpose of the study?

The wide range of autistic symptoms presents a formidable challenge to researchers looking for risk factors, causes, and treatments. This 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.

Who will be studied?

Families that consist of one (and only one) child affected by autism spectrum disorder and at least one child that is unaffected. Unaffected siblings are invited to participate as well.

What will the study require?

Each of the members of a family will have a slightly different role in this study, however, every individual invited to participate is essential to the study. Biological parents will complete standardized questionnaires and interviews about their children’s behavior, development, medical history, and daily interactions. Parents will also complete standardized questionnaires about each other’s behavior. A child with ASD will complete a battery of standardized assessments to measure verbal, nonverbal, and social-communication skills. All family members participating in this study will have their blood drawn for genetics research, participate in a medical genetics research evaluation, and have digital images taken.

What is the time commitment?

The assessments and interviews are estimated to last up to 10 hours which will be divided between two visits in our lab and phone calls.

What are the benefits of being in this study to my family?

Parents of children with identified developmental delays will receive a written report summarizing the assessment results. In addition, each participating member of the family will receive $40 in compensation.

Can my child be in this study?

Your child can be in this study if he or she is either:

• Is between 4 and 17 years of age; has either suspected or identified delays in social, communication, cognitive, or other areas, and if the child has no visual or hearing impairment, seizure disorder, or any known genetic syndrome

AND
• Both biological parents and, if applicable, a sibling are willing to participate in the study.

What safeguards are in place to ensure that the study is conducted ethically and the children who participate in the study are not harmed in any way?

The study has been approved by the Yale Human Investigations Committee, protocol # 0711003222. The examiners working with your child have extensive experience and clinical training.

Who is funding the study?

This study is funded through the Simons Foundation and the National Institute for Child Health and Development.

What other Universities are conducting this study in conjunction with Yale?

There are twelve other medical centers across North America based at the following universities: Baylor College of Medicine in Houston, Columbia University in New York, Emory University in Atlanta, Harvard University in Boston, McGill University in Montreal, Canada, University of California at Los Angeles, University of Illinois in Chicago, University of Michigan in Ann Arbor, University of Missouri in Columbia, University of Washington in Seattle, Vanderbilt University in Nashville and Washington University in St. Louis.

Who is involved at Yale?

The members of the research team include Ami Klin, Ph.D., Matthew State, M.D., Ph.D., Katherine Tsatsanis, Ph.D., Celine Saulnier, Ph.D. and others.

How can I get more information?

If you would like to get more information about the study, please call Linda Quirmbach at 203-785-3488 or email her at linda.quirmbach@yale.edu.