What Are Cancer Research Studies?
What is cancer research and why is it important?
Cancer research is the key to progress against cancer. It is a complex process that involves researchers from many different fields. It also relies on the participation of people with cancer, cancer survivors, and healthy volunteers, who can provide the tools and data to make progress against cancer.
Cancer research studies may lead to discoveries such as new drugs to treat cancer, new therapies to make symptoms less severe, or lifestyle changes to reduce the chances of getting cancer. Cancer research may also address big picture questions like why cancer is more prevalent in certain populations or how doctors can make existing cancer detection tools more effective in health care settings. These discoveries can help people with cancer and their caretakers live fuller lives.
Who should join cancer research studies?
As scientists continue to conduct cancer research, anyone can consider joining a research study. The best research includes everyone, and everyone includes you. Your unique experience with cancer is incredibly valuable and may help current and future generations lead healthier lives. When more people of all different races, ethnicities, ages, genders, abilities, and backgrounds participate, more people benefit. It is important for scientists to capture the full genetic diversity of human populations so that the lessons learned are applicable to everyone.
When you choose to participate in a research study, you become a partner in scientific discovery. Your generous contribution can make a world of difference for people like you.
What are the types of cancer research studies?
See below for definitions on the four major types of research and their subtypes:
- basic research
- clinical research
- clinical trials (interventional)
- quality of life/supportive care
- natural history
- clinical trials (interventional)
- epidemiological research
- translational research
Basic cancer research studies explore the very laws of nature. Scientists learn how cancer cells grow and divide, for example, by growing and testing bacteria, viruses, fungi, animal cells, and human cells in a lab. Scientists also study, for example, the genes that make up tumors in mice and rats in the lab. These experiments help build the foundation for further discovery.
- Clinical trials are research studies that involve an intervention, which is a treatment or change that may affect the results of cancer. These can lead to new treatments, care, and improved results for people with cancer, their loved ones, and people with a high risk of cancer.
- Treatment trials test how safe and useful a new treatment or way of using existing treatments is for people with cancer. Test treatments may include drugs, approaches to surgery or radiation therapy, or combinations of treatments.
- Prevention trials are for people who do not have cancer but are at a high risk for developing cancer or for cancer coming back. Prevention clinical trials target lifestyle changes (doing something) or focus on certain nutrients or medicines (adding something).
- Screening trials test how effective screening tests are for healthy people. The goal of these trials is to discover screening tools or methods that reduce deaths from cancer by finding it earlier.
- Quality-of-life/supportive care tests aim to help people with cancer, as well as their family and loved ones, cope with side effects like pain, nutrition problems, nausea and vomiting, sleeping problems, and depression. These trials may involve drugs or activities like therapy and exercising.
- Observational studies are studies that collect and analyze data from people. Some of these take place over a long period of time. These studies do not study the effect of a specific treatment or change.
- Natural history studies look at certain conditions in people with cancer or people who are at a high risk of developing cancer. Researchers often collect information about a person and their family medical history, as well as blood, saliva, and tumor samples. For example, a biomarker test may be used to get a genetic profile of a person’s cancer tissue. This may reveal how certain tumors change over the course of treatment.
- Longitudinal studies gather data on people or groups of people over time, often to see the result of a habit, treatment, or change. For example, two groups of people may be identified as those who smoke and those who do not. These two groups are compared over time to see whether one group is more likely to develop cancer than the other group.
- Population-based studies explore the causes of cancer, cancer trends, and factors that affect cancer care in specific populations. For example, a population-based study may explore the causes of a high cancer rate in a regional Native American population.
Epidemiological research is the study of the patterns, causes, and effects of cancer in a group of people of a certain background. This research encompasses both observational population-based studies but also includes clinical epidemiological studies where the relationship between a population’s risk factors and treatments are tested.
Translational research is when cancer research moves across research disciplines, from basic lab research into clinical settings, and from clinical settings into everyday care. In turn, findings from clinical studies and population-based studies can inform basic cancer research. For example, data from the genetic profile of a tumor during an observational study may help scientists develop a clinical trial to test which drugs to prescribe to cancer patients with specific tumor genes.
How is the safety of participants protected?
A series of federal rules keep research participants safe. These rules include the careful review and approval of the research study, ongoing monitoring, and informed consent. The informed consent process gives participants the chance to review all the possible risks and benefits of taking part in a research study. They can then decide if they want to take part in the study. When the research team has new information, they give participants this information to let them decide whether they want to continue taking part in the study.
Who are the research team members?
In every research study, experts design and run various parts of the study. These team members include
- principal investigator: oversees all aspects of a study, including trial process, patient recruitment, and supervising data collection and analysis
- research nurse: ensures communication between staff, study participants, and the referring health care providers and supports the principal investigator with data collection and quality control
- data manager: this team member makes sure that the data collected is relevant and accurate, prepares data for monitoring agencies, and analyzes data during and after the trial
- staff physician or nurse: is present during clinical studies, and cares for patients by checking for side effects and response to treatment
Who pays for research studies?
While each study is different, research study costs may be covered by health insurance or the research team running the study. These costs may include the drug being tested or lab tests performed solely for the trial. In some studies, you may receive a small payment for taking part.
Taking part in a trial may also require extra doctor visits, which may add costs for travel, housing, and childcare. You can check with the research team on whether they cover these costs.
What do participants get in return?
In return for taking part in cancer research, you offer hope for many people and provide opportunities for many 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
In some studies, you might get results of your genomic data that can help guide treatment. In clinical trials, you get a chance to try medicines that may be better than the standard treatment. Finally, in others you may get better ways to manage side effects.