A Guide to Cancer Clinical Trial Participation: It’s Not a Last-Ditch Option

Advocacy Groups | <b>FORCE</b>

Clinical trials are key in driving treatment advancements for patients with cancer – especially those with genetic mutations – and should not be looked at as a last resort.

Clinical trials are the backbone behind cancer advancements, and also help shape treatment guidelines, like those established by the National Comprehensive Cancer Network (NCCN), which also advocates that the best care for patients with cancer is oftentimes found on a clinical trial.

Trial participation is particularly important for patients with specific subtypes of diseases, like those with a genetic mutation that can be targeted with a specific therapy. Trials for these patients tend to be smaller than those with wider eligibility criteria, such as all patients with a certain cancer type.

“It’s really important – especially for our community – to be able to do whatever we can to enroll in research studies that are trying to recruit people with inherited mutations,” said Sue Friedman, executive director and founder of FORCE. “If we can’t complete these studies, the next time someone has a really great idea for a treatment or prevention for someone with an inherited mutation, we don’t want them to say that the community is too hard to enroll people into.”

Friedman, who is a cancer survivor herself, discussed the importance of clinical trials for patients with inherited mutations in her presentation at the 12th Annual Joining Forces Against Hereditary Cancers Conference. She emphasized that clinical trials are not only for people who feel that they have no other treatment options.

“There are clinical trials for the entire spectrum of care,” Friedman said. “We have studies for high-risk screening and prevention, as well as treatment studies, quality of life studies that are enrolling people who have never had cancer, people in treatment and long-term survivors… Many treatment options can wait until you’ve considered all your options, including clinical trials.”

FORCE offers an online resource that helps patients find clinical trials for which they are eligible, as well as describes the different types of studies and what they entail.

Patients can search their specific disease and subtype to find trials on clinicaltrials.gov, the comprehensive database that is maintained by the U.S. National Institutes of Health. FORCE’s tool provides the name and contact information of the study coordinator, which Friedman stressed is particularly significant because this is an important point of contact when people want to learn more about the trial.

Once someone finds a study that they are interested in, they should collect their medical records and look for items such as pathology, cancer stage, lab results and genetic or biomarker test results that may affect eligibility. Then, this information should be taken to the study coordinator to determine if the patient is eligible, and if so, how they can enroll.

Throughout this whole process, there should be clear communication between the current and prospective health care teams, too, Friedman emphasized.

“Talk to your doctor, even if you end up going to another facility with a different doctor, it’s really important to talk to your current health care team to consider all your options and make the decision that is best for you,” she said.

All of these steps lead to the patient participating in a clinical trial, and therefore being a major driver in the improvement of oncology care.

“We, right now, are the beneficiaries of the research efforts and the volunteers who participated before us. And likewise, we leave the legacy of our research participation today to future generations,” Friedman said.

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