Data privacy and the protection of participants’ confidential information are of utmost importance to ONDRI. You can be sure that the highest data protection standards are followed at all times.

Only Relevant Data Collected

When you participate in an ONDRI study, the study doctor (investigator) and staff will only collect data required to answer the research question in the approved study protocol. This may include information like date of birth, education, your diagnosis and medical history, etc.

Research protocols are written following stringent international research ethics governance rules, as well as Health Canada, the Food & Drug Administration and all federal and provincial privacy guidelines. For example, your name will never appear on research documentation; rather you are assigned a unique study identification number.

Access to research data is highly restricted and password protected. Researchers are obligated to protect your privacy and keep the personal information they see or receive confidential, to the extent permitted by applicable laws.

You Have a Right to Your Data

As a study participant, you have the right to access, review and request changes to your personal health information that has been collected for a research study.  

You Have a Right to Study Results

When the results of any ONDRI study are published, your identity will never be disclosed. You have the right to be informed of the results of this study once the entire study has been completed and analyzed.

To learn more about privacy at ONDRI see Brain-CODE, including informatics governance policy.