Clinical trials should meet pancreatic cancer patient needs to benefit as many as possible

Editor’s note: January is Pancreatic Cancer Clinical Trials Awareness Month. Throughout the month, we are featuring a “Shedding Light on Clinical Trials” series that provides key information about clinical trials and how they can benefit pancreatic cancer patients.

Pancreatic cancer patients who participate in clinical research have better outcomes. Every treatment available today was approved through a clinical trial. The Pancreatic Cancer Action Network (PanCAN) strongly recommends clinical trials at diagnosis and during every treatment decision.

Clinical trials are the only way for new treatments to be approved for patients. Patient participation in trials is critical, as is creating trials that match what patients need.

Efforts are being taken to make clinical trials an option for as many patients as possible, to learn from every patient and to put patient needs at the center of trials. Patients can also advocate for themselves and have conversations with their healthcare teams to ensure clinical trials are considered as a treatment option for them.

Making Clinical Trials an Option for More Patients

Many groups – including patient advocacy groups like PanCAN, government agencies and pharmaceutical companies – are working together to ensure clinical trials meet the general patient population’s needs.

One of the key pieces of this effort is expanding eligibility criteria so more patients can participate in trials and trial results will better reflect the larger patient population.

Eligibility criteria are important for clinical trials to operate successfully. But these parameters can be a barrier to enrolling enough patients in trials and applying the trial results to a larger patient population.

Also, some eligibility criteria and other challenges lead to a lack of racial and ethnic diversity in clinical trials. When this happens, trial results may not apply to all types of patients.

According to the American Society of Clinical Oncology (ASCO), “excessive or overly rigid eligibility criteria may impair the rate of trial accrual, restrict patient access to investigational drugs, and limit the ability to generalize the results to the broader population of patients who will ultimately use the drug.”

Several groups are working to expand access to clinical trials, which includes removing barriers for patients with pre-existing conditions that will not impact patient safety.

For example, ASCO and Friends of Cancer Research gathered groups of patient advocates, drug and biotech manufacturers, investigators and regulators for this purpose. They’ve already published recommendations to expand certain aspects of eligibility and are still working to do more.

Government agencies that create clinical trials and approve drugs – like the Food and Drug Administration (FDA) and the National Cancer Institute (NCI) – are on board, too. In 2018, the NCI followed these recommendations and expanded their eligibility criteria for NCI-funded cancer clinical trials.

FDA also holds a yearly “Partners in Progress” workshop to train new patient advocates on their roles in cancer drug development. At the latest workshop, FDA Oncology Center of Excellence deputy director Paul Kluetz, MD, spotlighted patient advocacy organizations as key to this process.

And PanCAN often works with other groups to ensure pancreatic cancer patients’ needs are considered and factored into clinical trials.

Self-Advocacy When Pursuing Clinical Trials

Unfortunately, many doctors still consider clinical trials a last resort or discourage patients from participating until they’ve tried all the standard treatments. If you are interested in clinical trials, you may have to advocate for this option with your healthcare team, and PanCAN encourages you to do so.

Self-advocacy means speaking up for yourself. This includes taking an active role in your cancer care and talking to your healthcare team about your needs.

If your doctor is not talking about clinical trials or is resistant to your participation in one, explain why you are interested in trials and advocate for yourself.

You are your own best advocate. PanCAN strongly recommends discussing your treatment goals with your healthcare team and knowing all your options – including clinical trials – at every stage of your disease.

And after discussing your interest in clinical trials with your doctor, if you feel that you are not being heard or that your needs are not being considered, consider getting a second opinion. You should feel comfortable and supported by your healthcare team, so PanCAN recommends seeking a healthcare team that suits all of your physical, mental and emotional needs. PanCAN’s Patient Central can provide a list of specialists and resources to help you choose your healthcare team.

Talking to Your Healthcare Team About Clinical Trials

Clear and open communication with your healthcare team at all times is key to receiving good cancer care. It’s important to let your doctor know why you are interested in clinical trials and what you are hoping to achieve.

Bring a list of clinical trials that interest you to your doctor. Ask questions and evaluate with your healthcare team whether a clinical trial is the right option for you.

During this discussion with your healthcare team, it is also important to understand and consider the value of each different treatment available through clinical trials.

There are benefits to all therapy types, but some may better meet your individual needs and goals. For example, studies have shown that patients who receive treatment based on their biology and their tumor’s biology have better outcomes. If your trial search results include biomarker-driven therapies, treatments based on individual biology, you may weigh these differently than broader trials.

Here are some questions to ask your doctor to help figure out if a particular clinical trial is right for you:

  • Do I meet the eligibility criteria for this trial?
  • Does this clinical trial align with my treatment goals?
  • What will participating in this clinical trial mean?
  • How will participating in this clinical trial affect my future treatment options?
  • How does this clinical trial compare to other treatment options you recommend?

PanCAN Is Your Ally

At PanCAN, patients are at the center of everything we do, and we are always here to help.

PanCAN’s Patient Central provides free resources and information about all things pancreatic cancer clinical trials, including:

  • General information about pancreatic cancer clinical trials
  • A personalized clinical trials search based on your diagnosis, treatment history, relevant biomarkers, preferences and more – grouped and summarized so you can better understand and evaluate each option with your doctor
  • In-depth details and answers to your questions about your personalized clinical trials information
  • Information to take to your doctor and help you prepare for conversations with your healthcare team
  • Genetic testing and molecular profiling to help you learn which biomarker-based trials you may be eligible for

Whether you want to know how trials work, what trials are available or what to do next, Patient Central is the place to go.

Clinical trials exist to find better treatment options for patients. The patient’s wants and needs should be at the center of all medical decision-making, including clinical trial design. PanCAN is working hard alongside others to ensure this is the case and helping patients access clinical trials.

Contact a Patient Central Associate
Contact Patient Central for more free clinical trials information and resources, including a personalized search or our clinical trials booklet. Patient Central can also answer any questions you have about anything related to the disease.