Participate in Research - FAQs

If you think about the wide range of treatments available for health problems in general—from headaches to cancer to diabetes—they all have one thing in common: we know they work because people took part in research studies that proved their value. At CAMH, we have hundreds of studies underway at any given time, all of which are helping us to advance our understanding of mental health and improve care, inform policy change, and advance further research.
Studies may not have any immediate or direct benefit to you but could contribute to improving care or developing new care options for people today—and in the future.

Through participating in a research study, you may have access to new treatments, but there are many potential benefits, including learning more about your condition, accessing new care options, receiving more frequent assessments and attention from an experienced team, as well as taking a more active role in your healthcare.

The reason we do research on mental health and substance use is because the treatments we have today don't work for everyone. We want to better understand mental health, and we are exploring new treatments that may benefit you, or someone like you, in the future. Your contribution can help to make treatments better in the future and increase our understanding of mental health conditions.

Some studies are simple and short—like completing surveys or doing an interview—while others may involve treatments, blood draws, brain scans, or multiple visits over several weeks or months. The research team will always explain exactly what’s involved before you decide to take part.

Before joining any study, you’ll be given a document called the informed consent form that describes all the information you need to decide if you’d like to participate. You’ll have a chance to ask any questions and talk to family, friends, or your care provider before making a decision. Participation is always your choice.

The informed consent form will outline information like:

- Why the study is being done (the research purpose);
- What you are expected to do while participating;
- What risks or benefits that may be involved in participating;
- Any medical or personal information that may be taken from you, as well what may be shared with others involved in the study as well as in the future;
- Other available options for you outside of participating.

Here are some questions you can ask the study team to make sure you understand what is involved:

What is the study about?
Will it help me, my relatives or other people with my condition?
Will taking part in the study affect my day-to-day life?
What will happen with my care if I do not take part in the study?
What are the risks or side-effects?
How long will the study last?
How often will I need to come for visits?
What kind of support will I need from my family and friends?
Does the study provide compensation for my transportation or related costs?

Every research study is different, and the team will explain anything you need to know—like possible side effects or what your participation might involve—before you decide to join.

In some studies, you may receive a new treatment being tested that may or may not benefit you, but it’s also possible it may not work for you. Some treatments being tested in the research study can cause side effects, which the research team will talk to you about during the informed consent process.

You might be asked to come into the hospital for visits, answer questions, or do certain tests that take time. In some studies, you may be placed in a comparison group that doesn’t receive the new treatment being tested, or you will receive the standard of care.

The research team will clearly review everything with you so you can decide if the study feels like a good fit for you.

No, you don’t need to be a CAMH patient to take part in research. Many studies are open to people from the general public—even if you’ve never received mental health or addiction care. In fact, some studies are specifically looking for people who are not currently in treatment or who do not have a mental health diagnosis.

That said, a few studies may require a referral from a doctor or access to your health records. The research team will let you know what’s needed for each study.

You may still be eligible to participate in some CAMH research studies. Many studies can be conducted entirely virtually, or include virtual components such as online questionnaires, phone or video interviews, or remote monitoring tools. Some studies are specifically conducted in different communities across Ontario. If in-person visits are required, the research team will let you know during the screening process.

Each CAMH study is designed to answer a specific question, so it needs to include people who match certain criteria—like age, health history, diagnosis, or current treatments. For example, a study that is testing a drug for depression will require participants to have a diagnosis of depression. These guidelines help keep participants safe and make sure the study results are as accurate and helpful as possible. The research team will ask screening questions before enrolling you in any study to determine your fit.

Not qualifying for one study doesn’t mean you won’t be a fit for another. There are many different kinds of research studies at CAMH. Browse the list of open research studies on the Find a Study webpage, or sign up for the CAMH Research Registry to be contacted for future participation opportunities.

Compensation varies by study.  All compensation details will be explained during the informed consent process.                                                                                                                                                                                                                                                                                                                                           

You have the right to change your mind at any time, for any reason, after you agree to participate in a CAMH study. If you decide to leave the study, it’s important to tell the research team. Leaving the study will not affect your current or future care at CAMH, your relationship with your healthcare team, or your ability to participate in future CAMH studies.

 Before joining a CAMH study, you may want to talk to a trusted care provider to help determine if participation is the right decision for you. Questions you could ask include:

Is taking part in a research study an option for me?
If the study team asks for a referral from you, how do I arrange this?
What are the risks and benefits of participating?
How does the treatment given in the study compare with standard treatments for my condition?
How would being in a study affect my health care with you?
What would happen at the end of the study, or if I withdraw from the study?                                                                                                                                           

CAMH is committed to protecting the privacy of individuals. The information gathered as part of any study or through the CAMH Research Registry is managed, stored and protected by CAMH, in accordance with Ontario law. If you are in a treatment study, your clinical information will be stored in CAMH’s electronic health record system. Your information will be accessible to the health care team directly involved in your clinical care, as well as the research team. If you have questions about privacy, contact the CAMH Information and Privacy Office (416 535-8501 ext. 33314).

Fill out the online consent and registration form, including your name, contact and personal information. If your personal information matches a study’s requirements, you may be contacted by a member of the research team. The study will be described to you in detail, and you may be screened to determine if the study is a good fit for you.

It collects your contact information and personal information (including your diagnosis). This information is used to help connect CAMH researchers with people who might be eligible for CAMH studies. Any information you provide is voluntary. You can ask to leave the Research Registry list anytime or update your information by contacting the CAMH Research Registry office at research.registry@camh.ca.

How quickly you are contacted after joining the Research Registry depends on several factors, including the types of research studies recruiting at the time, and how well your information fits a study’s requirements.

As a first step, you will be asked questions about your health, medical conditions, medications, age, and other factors. Every study has its own guidelines about who is eligible to participate. These screening questions help the research team make sure you are right for the study and the study is right for you. If you later decide that you don’t want to participate, you can tell the research team.

In Canada, we have laws and ethical standards that govern research with human participants. At CAMH, our Research Ethics Board, legal counsel and Information and Privacy Office help to ensure that these standards are respected by all CAMH researchers.
You have the right to confidentiality, so all your personal medical information and personal identification is kept private.
If you are eligible for a study, research staff will ask for your consent before you take part. You will be given all the details about the study, and your questions will be answered.
You have the right to decide to leave a study at any time. It will not affect your current or future care at CAMH, your relationship with your healthcare team, or your ability to participate in studies at CAMH in the future.

CAMH is committed to protecting the privacy of individuals. The information gathered as part of any study or through the CAMH Research Registry is managed, stored and protected by CAMH, in accordance with Ontario law. If you are in a treatment study, your clinical information will be stored in CAMH’s electronic health record system. It will be accessible to the health care team directly involved in your clinical care, as well as the research team. If you have questions about privacy, contact the CAMH Information and Privacy Office (416 535-8501 ext. 33314).