You may have been asked or you may already be involved in cancer research. Cancer research is an important part of improving the care that is available to teens with cancer. There are studies that focus on children and teenagers who have survived cancer, so you may also be approached in the future to participate.
Here are some research terms that you should know.
Clinical trials
Clinical trials are research studies that aim to improve treatment. When you enroll in a clinical trial you will be followed over time to see:
- how well a treatment works
- how safe the treatment is
- what kind of side effects the treatment may cause
Clinical trials can be designed to look at how cancer and its treatments work in the body, as well as how to make cancer patients more comfortable or improve their quality of life. Clinical trials are the best way to figure out whether a new treatment, or new combination of treatments, is better than the treatment that is already available.
Standard therapy
In clinical trials, new treatments are compared with standard therapy. Standard therapy refers to the therapy that is currently the best treatment for certain types of cancer. It is the treatment that patients normally get when they are not part of a clinical trial.
Trial phases
New treatments go through phases of testing. All treatments are first tested in a laboratory. If the treatment seems to work, it will move to a Phase 1 trial, then Phase 2, and, finally, Phase 3.
Note: Phase 1 and Phase 2 trials usually involve patients whose cancer has not responded to other, more standard, treatments.
- Phase 1: This aims to figure out the maximum doses of a treatment that can be given with acceptable side effects. Groups of study patients start with a low dose that is slowly increased until unacceptable side effects happen.
- Phase 2: The treatment is now given to patients with specific types of cancer, based on the results of Phase 1. The study looks at how the body and the cancer respond.
- Phase 3: The treatment is now compared with standard treatment to see whether it is better in some way (i.e., better cure rates, decreased side effects or late effects, shorter stays in hospital, etc.). These trials most often involve newly diagnosed patients.
Before each phase of a trial is started in a hospital, it is reviewed many times by many different experts to make sure that the safety and rights of patients are protected. The most common type of trial for teenagers to be enrolled in is a Phase 3 trial.
Other types of cancer research
You and/or your parent(s) may be asked to enroll in research that is not part of a clinical trial or is not related to testing a medical treatment. This kind of research is also important. It can help health-care professionals understand the impact of cancer on the lives of patients and families. You or your parent(s) may be asked to answer questions, fill out a questionnaire, try out a new technology or be part of a new program to help patients and families cope. Taking part in this kind of research helps improve the support that cancer patients and their families receive from the health-care system.
What is my role in research?
You will never be enrolled in a research study unless you give consent. If you do not want to be part of the research study, your health-care team will respect your decision. If you choose not to enroll in a research study, neither your treatment nor your relationships with the health-care team will be affected in any way.
In general, when you are part of a study, any information you provide is anonymous. This means you will not be identified by name in the research.
Taking part in a research study may not directly benefit you, but you will be providing new knowledge to other young people with cancer in the future. Your health-care provider or the researcher performing the study will explain the potential risks and benefits of the research to you and your parent(s).
It is important for you to be aware of your role in research. Ask questions: your health-care team expects this. Even if you rely on your parent(s) to make the final decision about whether you take part in a study, be sure you understand:
- why the study is being done
- what is expected of you as a participant
- what potential risks and benefits are involved in the study
- your right to withdraw from a study at any point, even though you have already given consent.
Who is the Children’s Oncology Group (COG)?
Cancer research studies often involve patients and health-care professionals from many sites across Canada and North America. This allows researchers and health professionals to work together and pool results. This kind of collaboration allows researchers to develop treatments for many different and rare forms of cancer. Many of these research studies are organized through the Children’s Oncology Group.
The Children’s Oncology Group has treated more children with cancer than any other organization in the world. It is the largest group running clinical trials in paediatric cancer and involves more than 200 hospitals. The research generated through these trials has helped overall survival rates improve from less than 10% to more than 80% over the past 50 years.
For more information
To learn more about taking part in a research study, check out the links below.
American Cancer Society - Clinical Trials: What You Need To Know