10 Cancer Clinical Trial Facts Every Patient Should Know

7/13/2015, Everyday Health Guest Columnist, Lynn Matrisian, PhD, MBA

Extraordinary scientific advances have been made in the last few decades in the fight against cancer. Translating these breakthroughs into clinical progress will significantly impact treatment for cancer patients.

But how much progress we make depends largely on patients’ willingness to participate in clinical trials and physicians’ encouragement of clinical trials as a treatment option.

For pancreatic cancer, for example, there are few effective treatment options. This makes clinical trial participation for this cancer vital to the research in which scientists are seeking new and better treatments.

Lack of awareness of trials, and low prioritization of clinical trials by physicians and patients facing cancer, contribute to low enrollment rates. Whether they’re reluctant to participate or unaware of the opportunities, physicians and cancer patients should not ignore clinical trials. People who are willing to be a part of this process will help us find new diagnostics and treatment options — for themselves and other cancer patients.

Here are 10 things you might not know about clinical trials:

1. Participating in a Clinical Trial May Benefit You and Others

Clinical trials may be the best option for you as a patient facing cancer, particularly if you have a disease like pancreatic cancer. Current U.S. national guidelines recommend enrollment in a clinical trial for patients with pancreatic cancer. Patients who participate in a trial may benefit from the cutting-edge treatment they’re getting. Importantly, clinical trials are the only way that researchers can develop new treatment options for future patients. By participating in a trial, you can make treatment progress possible.

2. Placebos Are Never Used in Place of Active Cancer Treatment

Participants in a cancer clinical trial will receive either the standard treatment option or the new treatment. The standard treatment is sometimes given together with placebos, which is the same as getting the standard treatment alone.

3. Each Clinical Trial Has Eligibility Criteria

To become a participant in a clinical trial, you must meet specific requirements, which vary from study to study. They may include current health status, type and stage of cancer, treatment history, gender, and age. These are important in order to identify a group of people with enough in common to be able to determine whether a treatment helped. Many clinical trials are for patients who have never been treated for that disease.

4. Clinical Trial Participants Have Rights and Protections

Each clinical trial has an established protocol, a study plan that contains complete details about the trial. Part of the clinical trial protocol is informed consent. This is a required process that ensures patients are given complete information about a clinical trial prior to their participation. In order to join any clinical trial, each participant must read and sign an informed consent form before any treatment or testing related to the clinical trial is started. This ensures that every participant understands his or her role and rights in the trial. Also, committees called Institutional Review Boards review and monitor clinical trials taking place at a hospital or research institution. These committees protect participants by ensuring that any possible risks (such as side effects) are reasonable in relation to the expected benefits.

5. You Can Opt Out of a Clinical Trial at Any Time

Patients have the right to decline involvement in a clinical trial at any time, even after signing-up or once treatment has started. Their doctors will then switch to the standard treatment for their specific condition.

6. You Can Find a Clinical Trial Near You

There are a number of resources for finding the right cancer clinical trial.

• The National Cancer Institute (NCI) sponsors most government-funded cancer clinical trials. The NCI has a list of active studies (those currently enrolling patients), as well as some privately funded studies. You can find the list on the NCI website.

• The American Cancer Society also provides a number of websites that offer information and services to help you find a clinical trial that’s right for you.

• The Pancreatic Cancer Action Network patient services program has the nation’s most up-to-date pancreatic cancer clinical trial database. It also offers highly-trained associates who can guide you through the entire process.

7. Two Types of Costs in Trials: Research and Routine Medical Care

You should discuss financial costs with the clinical trial coordinator and your insurance company before enrolling in a clinical trial.

• Research costs include anything specifically performed for the purpose of the trial. This may include the treatment or procedure being studied and required tests. In most cases, these costs are covered by the clinical trial sponsor.

• Routine medical care costs include services and procedures that participants would typically receive whether or not they participate in a trial. These will be billed to insurance or covered by the patient in line with their regular medical costs.

8. Patients in a Trial May Get More Attentive Medical Care

An entire medical staff is on your side during a clinical trial, and they will keep you informed. Clinical studies are led by physicians called principal investigators (PIs). These doctors, as well as research nurses and others, will closely monitor your health during the study to help with side effects and to monitor the safety and effectiveness of the treatment. Some studies have found that patients with pancreatic cancer treated in clinical trials had better outcomes than those who did not participate in trials, even when the patients received the same treatment.

9. The Clinical Trial Team Will Monitor  and Help Manage Side Effects

The study doctor and his or her team will fully explain anticipated side effects that you may experience due to the experimental treatment. It is important to remember that all cancer treatments, including standard treatments, may cause side effects. The degree to which a patient experiences side effects can range from mild to severe. However, side effects can often be managed successfully with the help of your healthcare team.

10. Contact With Other Survivors in Clinical Trials Provides Support

Receiving a diagnosis of cancer can be stressful and frightening for both the patient and the family, and making decisions such as whether to participate in a clinical trial can be difficult. It is important to realize that you are not alone. Connect with other survivors and caregivers in a way that meets your personal preferences: Join an in-person support group, connect with others online, or attend an educational event.

For example, at the Pancreatic Cancer Action Network, our Survivor and Caregiver Network provides one-to-one support and inspiration. The network is made up of pancreatic cancer patient and caregiver volunteers throughout the country who have provided their contact information to be given out through the organization.

Questions to Ask Your Doctor About Clinical Trials

What questions will you ask your doctor about clinical trials? Start with these:

• What are the benefits and risks of being in a clinical trial?

• What is the purpose of the trial?

• Why do you believe a trial may be effective?

• Are there any clinical trials available to me at this hospital? At other local hospitals?

• What will the clinical trial cost me?

To read the original article on Everyday Health or for more information, please click here.

Copyright © 2015 Everyday Health Media, LLC