Clinical research can take many forms and can have several different outcomes. In some cases, researchers are studying whether there is a link between a particular exposure, gene, or other risk factor and a certain disease, such as cancer. In other cases, researchers may study whether a certain drug or treatment works for a certain disease or may even study how being diagnosed with or living with a certain disease impacts people. These are just a few examples. In some cases, researchers seek volunteers to participate in their research. You may find out about these types of opportunities from your healthcare provider, from advocacy and/or support groups, or from other sources. You may also look for research studies that might be relevant to you by visiting websites like clinicaltrials.gov.
It is important to have appropriate expectations about what you might gain from participating in research and the fact that you might not personally learn anything from it. There are some rare situations where participating in a research study, particularly a clinical trial, may give you access to a new drug or treatment to which your cancer might respond better. However, most of the time, you are unlikely to directly benefit from research, but rather would be helping researchers understand more about a certain disease which could lead to better treatment, screening, and prevention methods over time. Most of the time, researchers must study thousands of people in order to find answers they can be confident in. This is why it is important to consider participating in research studies that are seeking people like you to participate. The more people researchers study, the more they learn! Sometimes there are also risks associated with participating in research and before participating in any study, make sure you consider the risks and benefits and carefully review the consent form (which is the form that goes over what is involved in participation, the benefits and risks of participation, and is where you say whether or not you want to participate), if applicable. You can also choose not to participate at any point, even after joining a particular study.
If you have just learned that you have cancer or have an increased risk for cancer due to an inherited gene mutation, you may be feeling overwhelmed and the idea of doing or thinking about one more thing may seem like too much. That’s ok. You can always wait and consider research at a later time, or not at all. I do encourage you to consider research opportunities that may be presented to you. They are your chance to help move scientific and medical knowledge forward.
Research Resource Examples:
http://www.facingourrisk.org/research-clinical-trials/index.php
