Participate in Research - FAQs

There are many potential benefits to participating in one of our studies. You may learn more about your condition, access new care, receive more frequent assessments and attention from an experienced team, and take a more active role in your healthcare.

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.

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. The choice is always yours to participate in a CAMH study and it will never affect the treatment or care you are receiving at CAMH.

Some studies are simple and short—like completing surveys or doing an interview—while others may involve interventions, 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 make a decision. 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 

You have the right to:

• ask questions about the study before giving consent and any time after that;
• ample time, without being pressured, to decide whether to consent to participating;
• receive your own signed and dated copy of the informed consent form;
• withdraw your consent at any time during the study without affecting your care or treatment at CAMH.

Many different types of studies take place at CAMH, but below are two common examples:
• Observational Studies: In these types of studies, researchers closely watch a group of people and measure specific things – for example, your behaviours. There is no treatment being tested in this type of research study. For example, a study might use brain scans to compare people with and without depression, looking for differences in the brain.
• Clinical Trials: This type of study tests a new therapy or approach to care to see if it is effective and safe. The treatment being tested in the research study might involve talk therapy, a medical device, or a new drug—or a combination of these. Often, experimental studies explore new ways to improve existing treatments. For example, one study might test a new cell phone app designed to support youth with depression.

The reason we do research on mental health and substance use is because the treatments we have today don't work for everyone and we want to better understand mental health, or 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 increasing our understanding of mental health conditions.

While we encourage anyone who is interested to take part in research, the decision to participate is always yours. Your decision should be based on your interests, beliefs, and expectations. 

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 go over everything clearly, 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.

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

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:

Fill out the online consent and registration form, including your name, contact and personal information. If your personal information matches initial study 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).