Research Connect FAQs

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

Even if the study does not have an immediate or direct benefit, you could be contributing to improving treatments or developing new ones. Remember, the choice is always yours to participate in a CAMH study.

To see what your experience might be like, please read a case study about someone who has participated in the past.

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 illness and improve treatments. For a concrete example, please read a case study about changes in care for people with schizophrenia.

The reason we do research into mental health and substance use is because the treatments we have today don't work for everyone. In some cases, the studies taking place now could help you personally. Other studies may have no immediate benefit, but they contribute to making treatments better in the future and increasing our understanding.

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

If you join a study, the research team will outline any specific risks or drawbacks. Depending on the kind of study, these experiences may include:

-receiving a treatment that may not work for you

-side-effects that cause discomfort or more serious consequences

-receiving a sham or current treatment, rather than a new intervention, if you are part of the comparison (control) group

-completing many clinic visits, questions or assessments, which could be time-consuming and invasive

-no personal or immediate health benefits

-no long-term therapeutic relationship.

People of all ages and backgrounds take part in research at CAMH. Some are receiving care at CAMH, but you do not need to be a current patient to participate. In some cases, you may need a referral from your family doctor.

Some people respond to public ads. Healthy volunteers, without any mental health or substance use problems, are also needed for many studies.

Many different types of studies take place at CAMH, but they generally fall under two umbrellas:

Observational Studies: In this type of study, researchers will look closely at a group of people of interest and measure specific variables or features. No treatment is given. An example of this is a study of brain scans of people with and without depression to look for differences in brain chemistry or function.

Experimental Trials: This involves testing a therapy or approach to care, to determine if it works and is safe. The treatment might involve talk therapy, a medical device, or a new drug or combination of drugs. Often studies look at new ways to improve on existing treatments. An example of this is a study of a new app for youth with depression.

You might be able to find a study running closer to your home through these Canadian and international organizations:

-Health Canada: Clinical Trials Database

-eMentalHealth.ca

-U.S. National Institutes of Health

-ISRCTN Registry

-World Health Organization

Joining is easy and free. Simply fill out the online registration form, including your contact and personal information (with your diagnosis, if any). 

Your name will be included in the CAMH Research Registry—a centralized, secure database used to connect CAMH researchers with people who want to get involved in approved studies. 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.

How quickly you are contacted after joining the 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. You may not be contacted immediately.

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 decide after screening that you don’t want to participate, you can tell the research team.

As a research participant, it is important for you to get all the information you need before you decide to take part in the study. Your research team should outline what is involved through a process called informed consent. Here are some questions you can ask 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?

-I'm on a wait list to receive a treatment. Will participating in the study affect my place on the wait list?

-How long will the study last?

-How often will I need to come to the clinic?

-What kind of support will I need from my family and friends?

-Does the study provide compensation for my transportation or related costs?

You will be provided with a consent form that you need to understand and sign. The consent form describes your rights as a study participant, and it includes important information about the study such as the purpose, time involved, risks, required tests and important contact information. 

Take as much time as you need to read the consent form and discuss it with a family member, spouse or partner, friend or family doctor. The researcher or study team must review the consent form with you and answer any questions. If you sign the consent form, it means that you understand what is involved and that you have made a choice to take part in the study. You will receive a copy of the form.

You have the right to change your mind 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, since you may need some final tests or procedures. 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?

-I'm on a wait list to receive a treatment. Would participating in a study affect my place on the wait list?

-What would happen at the end of the study, or if I withdraw from the study?

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. All studies at CAMH have been approved by our Research Ethics Board.

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 or withdraw from the registry 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.

If you are eligible for a study, research staff will review details about the study with you so you can make an informed decision about participating or not. An Informed Consent form will provide details about the purpose, procedures, duration and potential risks and benefits of the study.

It will outline:

-other available treatment options and how they may be better or worse than being in a study

-what is expected of you

-any medical or personal information that may be shared with other researchers directly involved in the research.

You have the right to:

-ask questions about the study before giving consent and any time after

-have ample time, without being pressured, to decide whether to consent to participating

-receive your own signed and dated copy of the informed consent form.

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 the research team, in accordance with Ontario law. If you are in a treatment study, your clinical information will be stored in CAMH’s e-Health Record system. It will be accessible to the health care team directly involved in your clinical care, as well as the research team.

The information we collect for the CAMH Research Registry would include your contact information and personal information (including your diagnosis). It 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 this list anytime or update your information by contacting the CAMH Research Registry office at 416 535-8501 ext. 31630 or research.registry@camh.ca.

If you have questions about privacy, contact the CAMH Information and Privacy Office (416 535-8501 ext. 33314).