Welcome to the registration process for our Research Registry, the world's largest database of families with Autism Spectrum Disorders (ASDs) and other genetic disorders, as well as controls. Our goal is to have 10,000 - 20,000 families with an ASD and hundreds of families with other genetic disorders in the Research Registry. We also need thousands of controls (families without an ASD who give us a baseline for understanding how individuals with an ASD vary.) The Research Registry:

• Invites participants to indicate which of ASDCARC's studies they are willing to participate in;
• Invites participants to complete various on-line research questionnaires relating to various symptoms or family issues. (You can also receive these questionnaires by regular mail.)
• Informs families about ASD-CARC's various research studies, through vehicles such as this web-site, newsletters and the global Autism Connects web-based community.
• Invites families to correspond and collaborate through "Autism Connects", including giving them the opportunity to give researchers feedback, provide observations, share concerns or suggest research areas.

By participating in this study, you will help us better understand the variablity among persons with ASDs. There are no anticipated risks from participating in these studies. We hold ourselves to the higest standards in ensuring you continue to have the following rights.

• Confidentiality: All information obtained during this study is strictly confidential and your anonymity will be protected at all times through information coding and encryption, and by storing all information in locked files or on a secure computer. Only Dr. Holden and those working with her will have access to the information in any form. The records will not be used for any other reason or given to anyone else without your written permission. Your name will not be used in any publication about these studies.
• Protection and Security of your personal information: Your personal information will be stored in a secure database. All identifying information will be stripped from the records of family members. Only the primary researcher will have access to your contact information. All information that you submit to this registry is encrypted with the same industry strength technology deployed by major online retailers and financial institutions.
• Voluntary Participation: Your participation in these studies is voluntary. You can withdraw from any studies at any time and your withdrawal from this study will not affect your future medical care. If you want to withdraw from any study, please contact us at autism@post.queensu.ca. Should you choose to remove your name from the Research Registry, your name will be replaced with your Registration number, and data collected will be retained for analysis - but no information that could lead to identity of the person supplying the information or about whom the information is supplied will be available to anyone, including the Research Registry Director.