For Participants

The BHDB collects data from research studies conducted at CAMH. This includes people who choose to participate in research studies related to mental health and addictions. The collected information is stored in a secure database, and participants are assigned a unique code to protect their identity. Researchers can then apply to use the data and biological samples for their own studies, but they must follow strict guidelines and obtain approval from a panel of experts before they can access the information. Participants who have consented to sharing their data may have their information used by researchers from CAMH or other institutions around the world. Participants of research that share their data with the BHDB accelerate the discovery of new treatments for brain health conditions.

If you participated in a CAMH research study, your data will only be stored in the BHDB if you have provided your consent to share it with the BHDB. Your data, such as responses to surveys and results from laboratory tests, contribute to advancing our understanding of brain health and related conditions. 

If you wish to remove your data from the BHDB, you have the right to withdraw your consent at any time. You can do so by contacting the BHDB Liaison by phone (416 535-8501 ext. 33740) or email (BrainHealth@camh.ca). Withdrawal of consent will not affect your ongoing medical care or participation in the study, but please note that any data shared prior to withdrawal remains accessible to approved researchers. 

Access to your data is restricted to approved researchers who have a legitimate research purpose. These researchers undergo a thorough review process and must adhere to strict ethical guidelines. The BHDB operates under a robust governance framework that includes experts from various fields, ensuring responsible and transparent data access. 

Protecting your privacy is a top priority. The BHDB implements rigorous security measures to safeguard your data. Your information remains confidential within the BHDB because we remove all personal identifiers within your data before uploading it to the databank and sharing it with researchers. Additionally, the data access committee and a research ethics board oversee data access and usage, preventing any unauthorized or inappropriate use of your data. 

If there is unauthorized access to your data, CAMH’s Information and Privacy Office will provide incident management support in accordance with CAMH policies and practices. The BHDB is subject to review and oversight by the BHDB Steering Committee, which includes a Chief Privacy Officer and representatives from patient groups. Additionally, the BHDB has implemented measures to protect the privacy and confidentiality of participant data, such as removing personal information and using only a code to de-identify participants, removing unique combinations of information, using secure data storage, and limiting access to authorized personnel.