Progress in cancer treatment results from researching new procedures and drugs through clinical trials. If you are thinking about participating in a clinical trial, you may feel nervous or unsure. This is normal. But the more you know about what’s involved and what to expect, the more comfortable you’ll be about your decision.
What are cancer clinical trials?
A clinical trial is a research study that evaluates a new treatment. The goal of these studies is to find better ways to diagnose, treat, and prevent cancer. In most cases, the new treatment has already shown promise of being an improvement over the standard treatment. Many clinical trials are tests to see how much better a new treatment works than the current one. People in clinical trials are among the first to receive new treatments. They are also closely monitored by doctors and other researchers. Patients are encouraged to discuss their treatment options, including whether a clinical trial is a viable option, with their health care team.
Doctors across the country and around the world follow treatment guidelines developed from the results of clinical trials so they can deliver the best possible care to their patients. Today there are about 12 million cancer survivors in the United States, mainly because the new therapies developed in clinical trials are helping people with cancer live longer than ever before. That is why it is so important to continue this research.
How do I know if a clinical trial is right for me?
Learn as much as you can. Before you sign up for a clinical trial, make sure you understand exactly what treatment is being offered and how it differs from the standard treatment available for your cancer. Ask about new or possibly unique side effects of the treatment that is being studied. This information will help you make an informed decision.
Understand what your insurance covers and doesn’t cover. Many medical insurance companies do not include coverage for doctors, treatments or other expenses related to clinical trials. While the clinic or hospital running the trial will cover the cost of any drugs under study, you might need to advocate for reimbursement from your insurer for coverage for the other costs associated with the trial.
Learn about your rights and protections
People who take part in clinical trials have rights and protections to make sure their privacy and well-being are maintained. For example, all study participants must sign an “informed consent” document. This document states that they have a full knowledge and understanding of the study, and of any possible risks and benefits. Patients will also sign a HIPAA Authorization form that will allow doctors to use your health informaiton as part of the study without using your name or other personal details. Participants have the right to drop out of any clinical trial at any time.
If you have concerns about any part of being in a clinical trial, speak with a patient representative at the institution where the trial is being conducted. The name and contact information for this person are usually included on the informed consent document. If a patient representative is not listed, ask if there is someone else you can speak with, such as a nurse or social worker, to answer any questions you might have.
As a patient in a clinical trial, you always have the right to leave a trial at any time for any reason. There will be no penalty and no harm done; all patients always have that legal and ethical right. Your doctor will also be in communication with the trial, and if it seems that the treatment is not working, the physician and patient together may decide to leave the trial.
Questions to ask
If you and your health care team have decided that a clinical trial is the right choice for you, there are a number of questions you should ask, including:
- What is the purpose of the study?
- What kinds of tests and treatments are involved?
- How do the possible risks, side effects, and benefits in the study compare with my current treatment?
- How might this study affect my daily life?
- How many visits per week or month will I need to make?
- How long will the study last?
- Is a hospital stay required?
- Who will pay for the treatment? Will the trial, or my insurance, cover all or part of it?
- What will I need to pay for myself?
- Will I be reimbursed for any expenses such as transportation?
- What type of long-term follow-up care is part of this study?
- How will I know that the treatment being studied is working? Will the results of the trial be given to me?
- Who will be in charge of my care?
- Are there other experts I can talk to about this study?
- Can I take the informed consent form home to talk it over with my family or partner?
How do I find a clinical trial?
To see if there is an appropriate trial for you, talk with your oncologist. He or she is most familiar with your case and can tell you if there are clinical trials for someone with your type and stage of cancer. You can also find listings of clinical trials through resources such as:
Download this guide as a PDF here.