Just as your teen should have a say in their care, they should also be given the opportunity to know more about and discuss any research study they are taking part in. Your teenager will learn about research in the teen program.
What is the latest research on cancer in young people?
Ongoing research is being done to find out the best way to treat cancers that occur in teenagers. Some of this research includes:
- better understanding the changes in the cells that can lead to cancer in young people
- developing better tests for diagnosis
- designing new drugs that better target cancer cells and have fewer side effects
- testing treatments that help the body’s own immune system fight cancer cells
- improving radiation therapy
- improving long-term follow-up care for teens and young adults
Below are some research terms that you may hear.
Clinical trials
Clinical trials are research studies that aim to improve treatment. When your teenager enrolls in a clinical trial, they will be followed over time to determine:
- how well a treatment works
- how safe the treatment is and what kind of side effects are associated with it
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 if a new treatment, or new combination of treatments, is better than the treatment that is already available.
Standard therapy
Standard therapy refers to the therapy that is currently the best established treatment. It is the treatment that patients normally get for that type of cancer when they are not involved in a clinical trial.
Trial phases
New treatments go through phases of testing. All treatments are first tested in a laboratory. If the treatment seems effective, it will move to a Phase 1 trial, then Phase 2, and finally Phase 3. 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.
Note: Phase 1 and Phase 2 trials usually involve patients whose cancer has not responded to other, less experimental, treatments.
- Phase I (1): This aims to determine the safest doses of a treatment, or the highest dose with the fewest side effects. Groups of participants start with a low dose that is gradually increased until side effects occur.
- Phase II (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 III (3): The treatment is now compared with standard treatment to see if it is better in some way (for example, if it offers better cure rates, decreased side effects or late effects, shorter stays in hospital, etc.). These trials most often involve newly diagnosed patients.
Teenagers are most commonly enrolled in Phase 3 trials.
For more information on research and clinical trials visit Clinical Trials: What You Need to Know from the American Cancer Society.
Other kinds of cancer research
You or your teenager may be asked to enroll in research that is not part of a clinical trial or that is not related to testing a medical treatment. For example, you may be part of a study that considers the impact of cancer on the lives of siblings, or that investigates how the hospital environment can be improved to feel more comfortable for patients and families who spend a lot of time there. 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 teenager may be asked to answer questions, fill out a questionnaire, try out 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.
Understanding your teenager’s role in research
Research studies help cancer experts and health professionals learn more about how to best treat cancer and how to best help teenagers and their families cope with cancer. In Canada there is no legal age of consent to participate in research. Before enrolling into a research study, you and/or your child will be asked to provide consent (or assent) to participate. If your child has capacity to provide consent, they will be asked directly to complete the study consent forms. If your child does not have the capacity to provide consent (e.g. your child may be too young to comprehend, or may have an impairment) an assent form can be completed by a parent or legal guardian on behalf of your child. However, a child may refuse to participant even if the parent/guardian has provided their consent.
In order to determine a child’s capacity to consent, they must (1) be able to understand the information that is relevant to making a decision, and (2) appreciate the nature and consequences of their decision. If you and your teenager do not want to be part of a research study, your child’s health-care team will respect your decision. Similarly, if you give consent for your teenager to take part, but your teenager does not, the health-care team will respect your teenager’s decision not to participate. If you or your teenager chooses not to enroll in a research study, neither their treatment nor your relationships with the health-care team will be affected in any way. Once your child turns 18, they will have the final say.
Understanding the risks and benefits of research
Taking part in a research study may or may not directly benefit your teenager. However, you and your teenager will both be providing new knowledge to other young people with cancer in the future. Your child’s health-care provider, or the researcher performing the study, will explain the potential risks and benefits of the research to you and your teenager.
It is important for you to be aware of your role and your teenager’s role in research. Ask questions. Your child’s health-care team expects this. Even if your teenager relies on you to make the final decision about participating in a study, be sure they understand:
- why the study is being done
- what is expected of them as a participant
- the potential risks of being involved in the study
- the potential benefits of being involved in the study
- you and your teenager have the right to withdraw from the study at any point, even if consent has already been given
Children’s Oncology Group (COG)
Cancer research studies often involve patients and health-care professionals from many sites across North America, including Canada. This allows researchers and health professionals to work together, pool results and ultimately, 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, with the participation of 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.