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Informed Consent for ASD-CARC Research Registry
What am I consenting to?
* I agree to be contacted by ASD-CARC about current and upcoming studies (you may be contacted about research studies but this is only to inform you about a study and you are under no obligation to participate).
* I agree to share the information I provide on the following forms with ASD-CARC for the purpose of contacting me about studies and for data analysis.
Potential Risks and Benefits:
There are no anticipated risks from participating in these studies. There are also no specific benefits from participating in this research. However, the information you provide may lead to a better understanding of the causes and potential treatments of ASDs and may help families in the future.
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. Only the primary researcher and those working with her will have access. Your information will not be used for any other reason than what you have consented to, 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:
Only the primary researcher and those working with her will have access to your family's information. All information that you submit to this registry is encrypted with industry strength technology.
Voluntary Participation:
Your participation in these studies is voluntary. You can withdraw from any study at any time. Your withdrawal from any study will not affect your future medical care. If you want to withdraw from any study, please contact us at autism.research@queensu.ca. Should you choose to remove your name from the Research Registry, all contact information will be removed, and data collected will be retained for analysis.
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By selecting 'Accept' I acknowledge that I have read and understand the above statements, and now agree to help us all understand the Mystery of Autism by participating in the Research Registry.
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