Clinical Trials

Myths vs Facts: Setting the Record Straight About Clinical Research Studies

Even if you don’t know much about clinical trials, you may be familiar with some of the myths surrounding them. Misinformation can influence whether you’ll consider this valuable treatment option. Be sure you know the facts, and you’ll feel more informed and confident as you discuss clinical trials with your doctor and your loved ones.

MYTH: Clinical trials are a last resort.

FACT: Actually, many patients today choose clinical trials as their first treatment option. In some situations, a trial may offer the best survival rate among treatments. At any stage, and for any type of cancer, they deserve the same consideration as other options for many reasons. You may have a rare type of cancer that doesn’t have as many standard treatment options. Your cancer may have become resistant to your current treatment. Or a clinical trial may involve a therapy with milder side effects, significantly improving your quality of life.

MYTH: Clinical trials are not safe.

FACT: All trials follow a very regimented process. They are subject to the safety measures put in place by the U.S. Food and Drug Administration (FDA), and every participating clinic, hospital, university and cancer center must follow them (see Safety Measures). Additionally, you will receive a higher level of care during a trial because you will be closely monitored by your regular oncologist as well as by the clinical trial medical team — more so than if you were not participating in a clinical trial. This extra attention may help identify and then treat side effects or other problems earlier.

MYTH: Clinical trials are much more expensive than standard-of-care treatment.

FACT: Every type of treatment has associated costs that depend on the therapy and other factors. It’s important to understand the financial considerations of a clinical trial before you begin. Trial sponsors may cover some trial-related expenses, and your insurance provider may cover other expenses. Check with your insurance company to see what your policy covers and what you will be required to pay. Explore government and advocacy sources for additional help with the financial aspect of a trial (seeFinancial Considerations).

MYTH: I’ll have to move to a major city to be in a clinical trial.

FACT: Clinical trials take place in big cities, rural areas and many places in between. Some people travel for clinical trials, while others take advantage of them in local hospitals, treatment centers and even doctors’ offices. If you find a clinical trial in a different city, check out the resources available for lodging during treatment. Assistance may be available to help cover the cost of temporary relocation. Don’t rule out a clinical trial because of its location until you’ve checked your resources.

MYTH: Once I start the trial, I’m locked in permanently.

FACT: Participation is always voluntary, even after the trial has started. Although you sign an agreement saying that you understand the potential risks involved and agree to join, you can withdraw at any time and for any reason. If your expectations aren’t met or if you are struggling with the side effects, you can leave and opt for standard-of-care treatment.

MYTH: If my doctor doesn’t recommend a clinical trial, I can’t participate in one.

FACT: Thousands of trials are taking place all over the country, and it may be difficult for your doctor to know about every one of them. Online resources make it possible to search for them on your own by cancer type and other key factors (see Online Searches).

Many patients take the “divide and conquer” approach, enlisting the help of friends and family to research trials. At the same time, let your doctor or nurse navigator know that you’re open to clinical trials so they can actively search.

MYTH: There is one clinical trial for each diagnosis. If it’s closed, I’m out of luck.

FACT: A variety of new trials are being developed on an ongoing basis. If the trial you’re interested in is closed (not accepting any more participants), keep looking. Sometimes expanding your search by using different key words can offer more results (see Online Searches). Talk with your doctor about appealing to the FDA for expanded access (also referred to as compassionate use).

MYTH: Trials offered outside my cancer center won’t be open to me.

FACT: Sites for clinical trials range from nationally known cancer centers to community hospitals and oncologist’s offices. Some people join clinical trials through their treatment centers, while others travel to participate. Before you rule out a trial because it will require you to travel, ask your nurse navigator about potential resources for assistance.

MYTH: I can't afford to be in a clinical trial because the treatments are so expensive.

FACT: Many people mistakenly assume their health insurance provider will deny coverage for their cancer care if they’re in a clinical trial because the treatment is experimental. First, keep in mind that most cancer treatments have associated costs that depend on the type and length of therapy, the treatment facility and other factors. Second, the trial sponsor typically covers research-related expenses, but talk with the trial coordinator to find out. Lastly, your insurance provider may pay for costs normally covered as part of standard care. Contact them early to find what your policy will and won’t cover so you’ll know what costs will be your responsibility to pay.

MYTH: Only people with advanced cancer are eligible.

FACT: Clinical studies are being conducted for patients at every stage of cancer. Depending on your diagnosis, a clinical trial may be considered your best first treatment.


Questions for Your Medical Team

Whether to participate in a clinical trial is up to you. Before making that decision, do your research. Consult with your doctor as well as the sponsors who are conducting the trial. Ask lots of questions, and continue to do so throughout the process.

For your oncologist:

  1. Why do you feel this clinical trial is a good option for me?
  2. Should I get a second opinion about participating in a trial?
  3. If I enter the clinical trial, will you still be my doctor?

For the trial sponsor:

  1. How long has this clinical trial been going on?
  2. Have you seen success with this trial?
  3. May I talk with a participant who is currently in the trial?
  4. Will my daily routine have to change, or can I continue to work, go to school, care for my family, etc.?
  5. If the trial isn’t close to my home, will my travel and lodging expenses be covered?
  6. How long will we give the trial before deciding if it is working?


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