Get Involved in a Research Study
When you take part in a research study, you may be one of many participants—dozens, hundreds, or even thousands of people—who are partnering with scientists to learn more about cancer. Both people with cancer, survivors, and healthy volunteers can get involved in many types of research studies, ranging from a study that tests a new drug treatment to a study that simply involves donating tissue samples over a five-year period.
Before you get involved in a study, it is valuable to learn all about what it means to be a participant, including the potential benefits and risks, how long the study is, whether it costs money, whether travel will be required, and more.
Why should I take part in a research study?
Getting involved in cancer research is important because it helps scientists find new ways to make progress against cancer. Your participation offers hope for many people and is an opportunity for researchers to find better treatments for others in the future. Depending on the research study, there may also be direct benefits such as:
- having access to the newest treatment, which is not available to people outside of the trial
- receiving care and attention from clinical trial staff while receiving treatment
These benefits might take the form of getting access to test therapies like individual counseling or using a new device to monitor the impact of certain habits on your cancer. You may receive a free advanced test like a biomarker test (a genetic analysis of tumor tissue) and personalized cancer treatment recommendations based on the test results. Any payments you receive might cover the cost of travel to the clinic or be in the form of a gift card.
What are the risks of taking part in a research study?
Different research studies involve different levels of risk. If the study involves testing a new drug treatment, researchers may expect physical side effects. Other research studies that only involve donating tissue samples or answering surveys are generally considered to be very low risk. In all research studies, the research team carefully assesses and communicates any risks, in consultation with the Institutional Review Board (IRB), to help you decide whether you would like to take part. The IRB is a group of scientists, doctors, and patient advocates that reviews the study protocol to make sure it follows all legal, ethical, and safety guidelines.
What if I join and then want to leave a study?
Joining a cancer research study is always voluntary. You may also choose to leave the study at any point in time.
What questions should I ask?
Before you sign up for a study, researchers will walk you through the informed consent process. During this time, you will have the chance to ask questions so you can fully understand what taking part in a study means for you. This decision can affect your health, time, and quality of life, so be sure to ask questions about the study, the risks and benefits, your rights, how the trial will impact your daily life, and about the costs. Some sample questions include:
- What is the purpose of this study?
- What does taking part in this study involve?
- Who is eligible to join this study?
- How long will I be in the study?
- Is there someone who I can talk to who has been in the study?
- What are the possible risks and benefits of taking part in this study?
- Will I need to travel to the hospital or clinic, and if so, how often?
- Will I be paid for taking part in this study or are there any costs I have to pay for?
How to get involved in a research study
You can get involved in research studies in many ways:
- join a research study as a participant
- donate tumor tissue or healthy tissue
- be a research advocate
“Helping others has been important to help me cope. I believe that my participation in clinical trials might benefit future patients, even if I am too early for a cure.”
—Carol, cancer survivor