In the following Q&A, Dr. Mitchell Smith, FLF Chief Medical Officer, dives into common questions on how to find and join a clinical trial, helping you navigate the complexities for follicular lymphoma (FL) patients.
Learn more on the topic by catching up on our FL clinical trials webinar here, where Dr. Mitchell Smith and Professor Jessica Okosun, FLF Scientific Advisor, were joined by two inspiring individuals living with FL, to discuss their experiences within clinical trials.
Choosing the Right Option
It can be difficult to find an appropriate clinical trial for yourself. The easiest way is if your doctor is participating in one that they know is a good option for you based on your disease, prior treatment history (if any), and your general health. Some key considerations to see if you might be eligible to join a clinical trial:
We at the FLF, and others, are working to develop effective AI tools to help you and your health care team find the right trial for you. Until that comes to fruition, you can search www.clinicaltrials.gov, which can be complex, or some organizations offer trial navigators who can guide you through the process. It helps if you have your diagnosis, a list of all prior treatments and know if you have any organ limitations.
Q&A with Dr. Mitchell Smith
Q: What trials are available in my country?
A: If you are being seen at a center with lymphoma specialists, they will usually know what trials are available for your specific situation in their, and other regional, centers. Even if you are not being seen at a major center, their websites often list trials they have available, as well as contact information for the clinical trials office. It is in everyone’s interest that patients enroll in clinical trials, so do not feel you are needlessly bothering them to see if they have a trial that might be right for you. Furthermore, on www.clinicaltrials.gov you can search by location.
Q: What centers have trials?
A: Major academic centers generally have trials, but so do many smaller centers. Many community oncology offices in the U.S. now join together into health systems and can offer trials locally. It is always good to discuss with your health care team whether they have trials for FL and, if not, what nearby centers do offer them.
Q: Can I join a trial outside my country?
A: Yes, but logistics may be difficult. A trial often requires not only mandated treatment days but also scheduled follow-up visits and tests, so it may be hard for you to comply with the treatment plan and the required follow-ups. Also, which costs are covered by the trial, which by your insurance (if applicable) and if that insurance carries over to another country, all need to be considered. Major centers that are accustomed to having people from other countries out often have support offices to help you find these answers, but in many centers this can be difficult.
Q: What barriers are there to entering a trial?
A: The first major barrier is finding a trial that fits your specific situation and treatment journey. You then need to consider the number and length of required visits, which will be clearly explained by the research staff and written in the informed consent document. Depending on the trial design, its location and your individual situation, this may make the trial difficult for you to enroll in and comply with. At times some follow-ups can be arranged with your local doctor, so always ask about this possibility. Financial and time constraints, as well as need for a support person, can be barriers. You need to consider, however, what barriers you may face with the option of standard care not as part of a trial. Also, many studies show that patients on clinical trials get excellent care, not only access to cutting-edge treatments, but close monitoring by the research office staff following strict protocols so nothing gets overlooked.
Q: What percentage of trials eventually become approved for use?
A: This is not a simple question as trials come in different phases. A phase 3 trial generally compares a new treatment with a standard treatment and is designed to obtain regulatory approval of the new treatment. These often are successful. Phase 2 trials test the efficacy and side effects of a new treatment in a defined group of patients. If this is an entirely new treatment the chance of response may not be known. However, if the new treatment is from a well-known wider class of drugs, for instance a new bispecific antibody or CART, we might be more confident in how effective it is likely to be. Such information, along with what alternatives you have to joining the trial, are important questions to ask and discuss with your health care team.
Disclaimer: The information provided in this blog post is for educational purposes only and should not be considered a substitute for professional medical advice. Always consult with your healthcare provider for personalised guidance and treatment options.
Your Voice Matters
Are you living with follicular lymphoma or supporting a loved one who is? Have you found strength in hearing others’ stories? Do you have an experience, perhaps from a clinical trial or taking a specific treatment, or a pivotal moment in your journey, that could help others?
We invite you to share your story and help shape the future of our work.
By contributing your experience, you can offer support, hope, and a sense of connection to others navigating life with FL. Personal stories are powerful, they inspire, inform, and build a stronger, more united community.
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