PARTICIPATE PRIVACY POLICY

The ASD-CARC Research Registry has ethics approval through the Queen's University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (file#6004460).

Confidentiality: All information obtained during ASD-CARC's studies is strictly confidential. Participant anonymity is protected at all times through information coding and encryption. All information is stored in locked files or on a secure computer. Only the research team have access to the information in any form. The records are not be used for any other reason or given to anyone else without your written permission. Identities are not disclosed in any publication about these studies.

Protection and security of your personal information: Personal information of participants is stored in a secure database. All identifying information is stripped from the records of family members. Only members of the primary researcher's team will have access to both contact information and patient information. All information that is submitted to this registry is encrypted with the same industry strength technology deployed by major online retailers and financial institutions.

Voluntary Participation: Participation in any ASD-CARC study 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.research@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. No personally identifying information will be available to anyone, including the Research Registry Director.