Clinical Trials

The treatment advances made through clinical trials for myelofibrosis have brought new hope to people with this rare cancer. Trials are currently underway for new approaches, including the identification of gene inhibitors that may lead to additional treatment options. Researchers continue to look for gene mutations that will open the door for future therapies.

Most cancer treatments used today were once research therapies or procedures that were developed, tested and evaluated through the clinical trials process to gain approval from the U.S. Food and Drug Administration. Such crucial research fuels treatment advances, giving more people the chance to live longer and have better quality lives after a cancer diagnosis.

These structured research studies test the safety and effectiveness of new medical approaches or interventions. They evaluate methods for disease prevention and patient screening; tools and procedures to diagnose disease; new or improved treatments such as drugs or drug combinations, medical procedures or devices; and lifestyle and behavioral changes that may improve health and/or quality of life.

Studies may include testing drugs, biologics and other non-medication therapies such as radiation therapy and surgery, medical devices, screening approaches and other interventions. Trials may also evaluate patient-reported outcomes, which are important for improving the quality of patient care.

Benefits of Participating

Clinical trials have many potential benefits, such as the opportunity to access leading-edge treatments not yet widely available. They may be the best treatment option if your current treatment isn’t working as well as it once was, or if you have a rare type of cancer, such as myelofibrosis, that hasn’t been studied as much as others and has few, if any, approved treatments.

You will be closely monitored by the clinical trial medical team as well as by your regular oncologist. This extra attention may help identify and treat side effects or other problems earlier. Even after the trial ends, you will remain in close contact with the team.

As with almost any cancer treatment, clinical trials can present potential risks or inconveniences. Ask your medical team about possible side effects and the number of medical visits and tests required. Clinical trials often have little flexibility because participants are required to follow the set protocols, which may affect your ability to work, attend class or meet other commitments. That’s why it’s important to make sure you can accommodate the schedule before you commit.

Informed Consent Process

While considering a clinical trial, you will receive comprehensive information in a document known as an Informed Consent form. It details the purpose of the research, including your role in the trial, the treatment to be studied, how the trial will work, risks and benefits. The form also explains how you will be monitored, the potential side effects of the treatment, the current standard of care for your type of cancer (regardless of the doctor or the institution in which you receive care), the safeguards in place to protect you, and how to withdraw from the trial at any time.

You will be given time to study the information and get answers to additional questions you may have. Before signing the form, check with your insurance provider to determine the procedures that are covered and those you will be required to pay out of pocket.

It is important to remember that volunteering for a clinical trial will not jeopardize your care. You may leave the trial at any time, for any reason, and opt for standard-of-care treatment.

Trial Participants Are Needed

A record number of cancer therapies are currently in development. The need is great for more clinical trial participants so these promising new treatments can be evaluated and approved for the public. Cancer patients who are well-informed about clinical trials have been found to be much more likely to participate, particularly when they are eligible for studies being conducted where they are receiving treatment.

Where Clinical Trials Take Place

Cancer research trials are being conducted worldwide, and the sites for these trials range from nationally known cancer centers to community hospitals and oncology offices. Some people join clinical trials through their treatment centers, while others travel to participate. With new studies continually opening, it’s difficult for doctors to know about them all. If you are open to being a participant in a clinical trial, you can help find one. Online resources now make it possible for you to search for a trial on your own. Before you rule out a trial because it will require you to travel, ask about potential resources for assistance.

Is A Clinical Trial Right For You?

Choosing to participate in a clinical trial deserves careful consideration. The element of uncertainty can be unsettling, so ask questions, consult with your doctor and consider getting a second opinion from an expert physician in myelofibrosis. Contact the trial coordinator, who will know all aspects of the study and can help address any concerns. You can request additional information or printed materials, such as results from previous phases of the trial and the trial sponsor’s track record on cancer drug development. Find out if the investigational drug will be available to you post-trial, what it will cost and how your care will be transitioned back to your current doctor. You can also conduct your own online research using the reliable resources in this guide or those recommended by your medical team.

Ultimately, it is your decision, and with some research you will have the knowledge you need to give this treatment option the consideration it deserves.

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