Privacy Notice |
Established in 2012, the Toronto Dementia Research Alliance (TDRA) is a collaboration among the University of Toronto, Baycrest, the Centre for Addiction and Mental Health (CAMH), Ontario Shores Centre for Mental Health Sciences (Ontario Shores), Sunnybrook Health Sciences Centre, and the University Health Network. TDRA is working together to better understand, prevent and treat dementia by creating a stronger link between basic science and clinical research, embedding research into care, improving outreach and education to the community, and increasing the efficiency of collaborative research processes across the city. CAMH is currently hosting TDRA. TDRA has previously been located at the Sunnybrook Health Sciences Centre and may move to another TDRA partner site in the future.
Most people are not aware of research studies happening in the Toronto area or how to get involved in research. The TDRA and its strategic partners aim to help connect people like you with studies that may be a good fit for you. Where you agree to share your information on these forms, a small group of people at TDRA will collect, use and share your information in the following way:
- If you want to be informed about future studies taking place at one of TDRA's partner sites, the TDRA Team will collect your name, email address and/or phone number, and screening questionnaire responses (e.g. preferred study location, age, gender, medical history). TDRA will share your screening questionnaire responses- but not your name or contact information - with study teams at the TDRA partner sites to see which studies may be a good fit for you. If a study team thinks your profile is a good fit, they will notify the TDRA Team and we will reach out to you to see if you are interested in learning more. If you agree, only then will we share your name and contact information with the study team.
- The outcome of your study experience may be relayed back to the TDRA Team for recruitment and analysis purposes. You may be eligible for multiple studies, but it is not expected that you would be approached for more than 3 studies at a given time.
The TDRA Team will also de-identify your data and use it along with the data from other people who have signed up to review and improve this service. Any information you provide to TDRA through these forms will be used for the purposes we listed above and for no other purpose. The electronic forms and systems we use to collect and store your data will be protected with standard safeguards as per CAMH privacy policies and will only be accessed by the TDRA Team. Your data will be stored for up to twenty-five (25) years and then securely destroyed. If you no longer want to be contacted for a study, you can contact the TDRA Team and we will delete your information from our system. If you no longer want to be contacted for a study, if your contact information or survey responses change, or if you have questions about how the TDRA Team collects, uses, or shares your information, please reach out to tdra@utoronto.ca or 416-535-8501.