Whether or not to participate in a clinical trial can be a difficult decision to make, and it shouldn’t be made lightly. It can be useful to weigh the decision together with your family or support system, to try to understand both your motivation and hesitations, and decide if the particulars of a study is right for you.
“Clinical trials are one of the most important tools we have for improving health and finding new and better ways of treating disease. The information that’s unlocked helps change medical practice, helps uncover which drugs work best for which people in which situations,” says Karen Knudsen, PhD, Director of the Sidney Kimmel Cancer Center at Jefferson Health.
One place to start is to search the Sidney Kimmel Cancer Center at Jefferson Health’s database for clinical trials that might match your particular cancer type and stage and then bring this information to your doctor. You could also ask your doctor whether there are any trials she or he might recommend. Here are some common questions that may help you make an informed decision.
How do I know if a clinical trial is right for me?
Clinical trials have very specific criteria for who can participate. A study may not just be for women with breast cancer. Instead it might be for women with triple negative breast cancer who have already tried chemotherapy and still have the disease (such as this study). Your doctor can help you find trials that might be appropriate for you, or you can ask her what to search for.
Once you find a trial, it’s a good idea to talk to your doctor, as well as your family members and friends about the pros and cons of participating. Keep a running list of questions for your doctor and bring them to your next visit. Always ask about and be sure you understand the risk of side effects for all treatment groups that you could be assigned to.
Why should I test a new treatment?
First, being part of a clinical trial often gives you the opportunity to try a new treatment that isn’t widely available yet. It’s like being an “early adopter” in technology and sampling a treatment before it becomes available on the market – if it is ultimately approved. Sometimes, doctors won’t consider a clinical trial for you until you’ve first tried some of the standard therapies and interventions. If those don’t work, clinical trials can offer new options.
It’s also a chance to give back to your community. Every clinical trial you participate in adds a piece of your identity to the dataset that determines whether and how a drug should be used. In a sense, clinical trials give you representation in the knowledge base that doctors use to make treatment decisions.
While medical data is beginning to reflect more of the population, decisions are still being made based on data collected on a very homogenous group – historically, white and male. Because of the work of researchers who understood that data didn’t capture our differences, we now know that our bodies react differently to medications, or new treatments, depending on whether we are male or female and our genetic background. These differences can have big implications in helping a doctor and family decide the right treatment. But we can neither learn what those differences are, nor how they might alter the standard course of treatment, without first collecting the data in clinical trials.
Are clinical trials covered by insurance?
It’s important to check with your insurance carrier and also the clinical trial coordinator ahead of time, but most clinical trial costs are covered by the sponsor of the trial. That includes the costs of extra visits, or special tests, and some provide for travel costs to and from the site. It might be useful to ask your insurance company whether the doctor providing most of the care in your clinical trial is in your network. Medicare covers the costs of approved cancer clinical trials.
What if I agree to participate, but don’t get the active or new treatment?
In some clinical trials, every participant receives the new or “active” treatment, in others, there are groups who don’t receive the new treatment. Although this may seem unfair, it’s one of the best ways researchers have to understand if a treatment works or not. Those who aren’t treated with the new therapy are still treated with the highest standard of care available. In fact, clinical trial patients, even those who do not receive the active treatment, are often followed more carefully with additional doctors’ visits and tests that can help doctors spot changes in your disease more quickly and adjust your course of treatment as necessary.
Where can I find clinical trials in my area?
Search the Sidney Kimmel Cancer Center’s database for clinical trials, and then bring your print-outs to your doctor.
You can also search the national database for cancer clinical trials. For all clinical trials – those for cancer and other diseases – or you can use clinicaltrials.gov for all diseases.
For additional resources about cancer clinical trials try the American Cancer Society’s resource page.