Who can participate in the study?

To participate in the TAY Cohort study, you need to be between 11-24 years of age, located in the province of Ontario and currently accessing mental health services at CAMH.

How long will I be in the study?

You will be involved in the study for 5 years from the date you are enrolled. While we would love to have you for all 5 years, remember that your participation is completely voluntary and you are free to withdraw your consent and stop your participation in the study at any time. Your participation in the study will have no impact on your treatment options at CAMH.

What will I be doing in the study?

You will be invited to meet with us (sometimes virtually, sometimes in-person) every six months for the next 5 years. There are 5 groups of activities that make up this study (as seen in the Study Timeline. Depending on what you are comfortable participating in, the activities could include:

• Answering questions and completing activities on an iPad
• Give samples such as blood or saliva and urine
• Brain imaging (MRI, EEG), heart rate assessment and body measurements

Remember that your participation in each activity is completely voluntary. You can choose to opt out or not do any activity that you may not be comfortable with.

How long will each visit take?

Each visit may take anywhere from an hour to around 5.5 hours. The amount of time you will spend at each visit will depend on what the schedule is for that day which can be found on the Study Timeline and which activity you decide to participate in.

For the longer visits, you can choose to break them up into more than one day so your appointments are shorter if that is preferable for you. You can also take breaks whenever you like.

Where will the visits take place?

The study visits will take place at CAMH (1001 Queen St. W. or 250 College St.) or online in the comfort of your own home.

What will I gain from the study?

While your participation in the study will not directly benefit your health, you will receive compensation for your time and effort. You will be compensated in either cash or gift cards and will be paid at each study visit. If you choose to participate in every activity at every visit, you can earn up to $1,490 through your 5 years with the study.

The study will reimburse the following for each study component you complete: $40 for questionnaires and interviews, $30 to your caregiver for questionnaires and interviews, $30 for the iPad games, $20 for the blood sample or $10 for the saliva sample, $10 for the urine sample, $20 for the heart rate assessment, $25 for the EEG assessment or $50 for the MRI scan.

If you would like, we can give you a summary of the results from the iPad games to help you identify any learning needs you may have. You can also receive a picture of your brain on a print-out, a t-shirt, or as a 3-D printed model if you participate in the MRI. Additionally, you will receive reimbursement to cover costs of participation (parking fees, public transportation, meals etc.).

Finally, your participation will help us develop a better understanding and future supports for other young people with mental health concerns.

What activities will my caregiver complete if I want them to participate with me in the study?

With your permission, we will ask your caregiver to complete some questionnaires and interviews about your life, health, and behaviour. These interviews and questionnaires can take between 35 minutes to up to 2 hours to complete and they will be reimbursed $30 at completing each study timepoint, which at times can be broken up into multiple visits.

Are there any risks involved?

You may feel uncomfortable or tired while completing some of the assessments or tasks. There will always be someone available to support you if this happens. Please remember that you do not have to participate in any part that doesn’t feel good to you and you can stop a session at any time.

Deciding not to involve a caregiver or your caregiver deciding not to participate does not affect your ability to participate in the study.

Will my information be kept private and confidential?

All information about you collected during the study will be kept private and confidential in a secure database. All personal identifiers (like name, address, etc.) will be removed and replaced with a specific code number. Information will only be seen by researchers connected to this project.

Some of the interviews and questionnaires that you will complete as part of the study may be useful to your healthcare providers for your diagnosis and/or treatment. You can choose to give us permission to share the results of these assessments with your healthcare provider at CAMH.

Is there anything that can’t be kept private or confidential?

There are three circumstances where we would need to break confidentiality. These include:

1. A serious possibility that you may harm yourself or others
2. If you tell us someone under the age of 16 has experienced or is experiencing abuse, harm, or neglect
3. If you have experienced abuse by a healthcare worker

If any of these come up, then we are required by law to report and let someone know, for the sake of your safety and wellbeing.

I have more questions. Who do I contact?

You can contact us via email at TAYCohort@camh.ca, call or text (437) 324-7914 if you have any more questions about the study!

General Study FAQs

• Who is funding the TAY Cohort Study?

TAY Cohort Study is funded by the CAMH Discovery Fund.

• Who is the TAY Cohort Study collaborating with?

The TAY Cohort Study is collaborating with the Margaret and Wallace McCain Centre for Child, Youth & Family Mental Health, the Krembil Centre for Neuroinformatics (KCNI), the CAMH Brain Health Imaging Centre, the Cundill Centre for Child and Youth Depression, the Slaight Family Centre for Youth in Transition, and Institute for Clinical Evaluative Sciences (ICES).

• Why are you collecting a blood or saliva sample?

Researchers currently think that there are some genes that may be linked to different mental health challenges. Saliva sample and blood sample will be used for genetic and epigenetic analyses. Having a blood sample will also allow for analysis of plasma proteins, hormones, and immune markers. Having more genetic data to look at from people with lots of different experiences will help researchers to better understand the connection between genes and experiences.