Q & A
Will there be risks?
Yes, there are risks involved in being in a clinical trial. By the same token, risks are a part of any medical test, drug, or procedure. A more important question is whether the risks are outweighed by the possible benefits. People with cancer are often willing to accept a certain amount of risk for a chance to be helped, but it is always important to have a realistic idea about the actual chance of being helped.
Will I be a “guinea pig”?
There’s no denying that the ultimate purpose of a clinical trial is to answer a medical question. People who take part in clinical trials are research subjects and may be required to do certain things or have certain tests done to stay in the study. But this does not mean that you will not receive excellent, compassionate care. In fact, most people enrolled in clinical trials appreciate the extra attention they receive from their health care team. In a recent Center Watch survey, more than 1,000 study participants were asked if they would enter a clinical trial again. Overall, 77% responded “definitely,” 20% answered “maybe,” and only 3% said “no”.
Will I get a placebo?
The vast majority of cancer clinical trials do not involve a placebo alone. It would be unethical to give someone an inactive medicine if it would deny him or her the chance to get one that has already been shown to work.
Will my information be kept confidential?
To the extent that is possible, all of your personal and medical information is kept confidential in your medical records. Of course, your health care team has access to this information, just as they would outside of a clinical trial. Some members of the research team may also look at your records, because the study sponsor needs your medical information when submitting data to the FDA while trying to get the treatment approved.
I think I’m eligible, now what?
Once you’ve found a study or studies that you think you’re eligible for, deciding if it’s the right one for you can still be tricky. And there may not be one best study for you. Again, learning as much as you can is key. A good first step will be to talk with someone connected to the study. This could be the Principal Investigation- the doctor in charge of the study or a research coordinator. Research coordinators are usually nurses. Their job is to check to see if people meet eligibility criteria before entering a study. They also make sure that the study protocol is followed for each patient. Often they serve as a link between study patients and their doctors. Both principal Investigators and research coordinators should be able to answer any questions you have about the study.