Brain Tumors

Understanding Clinical Trials

Currently, scientists and doctors are working to learn more about how brain tumors begin, how to quickly diagnose them, how they can be prevented and the best ways to treat them. Much of this research is conducted in clinical trials, which are essential for evaluating new treatments for people with brain tumors.

There are many reasons to consider clinical trials. They could offer you access to new treatments that aren’t yet available to the general public. You may have a rare type of brain tumor that hasn’t been studied as much as other types, or your current treatment may not be working as well as expected. By simply participating, you are helping refine and improve the way millions of people with all types and stages of cancer are treated.

In addition to asking your doctor about available clinical trials, you are encouraged to do your own research. Learn more by talking with other people who have participated in a clinical trial. Keep in mind that everyone has a different treatment experience, so you cannot expect to have an identical response to treatment or the same side effects. You can, however, find out what it’s like to receive care within a trial. Regardless of the information you gather, participating in a clinical trial is your decision.

Participating in a Clinical Trial

Clinical trial participants must meet certain eligibility criteria, such as type and stage of disease, conditions specific to what the trial will study, age and overall health. Sometimes the results from diagnostic tests can be used to determine if you are a candidate for a certain trial. Your medical team may use existing tissue samples, blood test results and scan reports to avoid repeating procedures.

Once you are accepted into a trial, your medical research team will include doctors, nurses, social workers and other health care professionals. You will have regular visits with this team, as well as visits with your regular doctor. You will be carefully monitored throughout your care. Clinical trials are carefully thought out, planned and performed in an extremely consistent manner so that all patients are treated exactly the same, from medication dosage and schedule to the frequency of follow-up appointments. Whether you’re at a small rural hospital or a large facility in a metropolitan area, your medical team is responsible for diligently following all of the same protocols and safety measures for your treatment plan. Even after the treatment ends, you will continue to be in close contact with the medical team managing your trial.

Financial Considerations

Cost is a common concern when you consider participating in a clinical trial. Routine patient care costs typically include those related to doctor visits, hospital stays and some testing procedures that are part of standard care and may be covered by your insurance. Research costs, which are directly related to the clinical trial and include drugs and procedures, are typically covered by the trial sponsor. Sponsors of clinical trials include government agencies (such as the National Cancer Institute), independent groups of doctors and health care institutions, or the pharmaceutical or biotechnology industries. Before dismissing the idea of participating because of the cost, research available resources and explore your insurance plan benefits. You may find that you can have access to an innovative treatment and be an integral part of cancer research without incurring a great deal of additional expense.


Understanding Informed Consent

Before volunteering for a clinical trial, you will receive detailed information about the clinical trial in an Informed Consent form. This form details the purpose of the research, including what your role will be in the trial and how the trial will work, as well as benefits, risks and other pertinent information. The form will include how you will be monitored and what side effects to expect, the best standard of care for your stage of disease (regardless of the doctor or institution), the safeguards in place and how to withdraw from the trial at any time. To ensure you fully understand what you are agreeing to, you are required to review the form during the Informed Consent process.

Before signing the form, check with your insurance providers to determine what procedures are covered and what you will be expected or required to pay out of pocket. Although many trials cover the costs of certain treatments, other expenses may be the responsibility of the participants, which is best to know before you begin a trial.

You are encouraged to ask questions about anything you don’t fully understand. To help you make a more informed decision, talk with your medical team about the many falsehoods that persist about clinical trials. For example, although there is fear to the contrary, participants are guaranteed to receive, at minimum, the current standard of care treatment during the trial, meaning you never jeopardize your care by choosing to participate. Rest assured, you can continue to ask questions and share your concerns with your medical team throughout the trial. And, although you sign the Informed Consent form, you are not locked in. You may change your mind at any time during the trial and choose to receive standard of care.



Myth vs Fact

MYTH: Clinical trials are only for people who have no other options for treatment (a “last resort”).
FACT: Clinical trials of cancer treatment may be available for individuals with cancer of all types and stages.
MYTH: Clinical trials only take place at large hospitals or cancer centers.
FACT: Clinical trials occur in all parts of the country, in both rural and urban areas.
MYTH: Signing the Informed Consent form “locks” you into staying in a trial.
FACT: You are free to change your mind at any time, even after signing the Informed Consent form. You can drop out of a trial at any time for any reason.
MYTH: A clinical trial must be recommended by a doctor for a person to participate.
FACT: If your doctor does not talk to you about clinical trials, raise the topic yourself. You may also search for clinical trials online.
MYTH: Some participants in a clinical trial will get a placebo (sugar pill) instead of treatment.
FACT: Participants in cancer clinical trials receive, at minimum, the current standard of care, and will never receive a placebo instead of cancer treatment.


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