- Why Should I Join a CAMH Study?
- Am I Eligible to Participate?
- How Do I Add My Name to the Research Registry?
- What Happens When I'm Contacted for a Study?
- What Should I Ask My Care Provider?
- What Are My Rights?
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.
-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.
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 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?
-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.
-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.
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Together, we have fueled progress, but there is still work to do.