Clinical Trial Participation is Key for Hereditary Cancer Research Advancement

Although individuals may have concerns about enrolling in a study, their involvement may lead to new discoveries.
BY Katie Kosko
PUBLISHED October 20, 2018
“Plenty of other people volunteer for clinical trials.” “My doctor didn’t refer me, so I must not qualify for one.” “I’m going to be a guinea pig.” Those are among the many myths associated with clinical trials for cancer research.

But the facts are many people may be eligible to enroll, patients will at least receive standard of care and only 3 percent of adult patients with cancer participate in clinical trials, explained Sue Friedman, a hereditary breast cancer survivor and executive director and founder of Facing Our Risk of Cancer Empowered (FORCE), a nonprofit organization dedicated to improving the lives of people affected by hereditary breast, ovarian or related cancers.

During the presentation at the 11th annual Joining FORCEs Against Hereditary Cancer Conference held Oct. 19-20 in San Diego, Friedman and health care workers from five cancer centers discussed how critical it is for patients with cancer to become active participants in research that can accelerate the field.

“It is very personal to us. It’s personal to our families,” said Friedman. “If we want to see further advances we have to be the ones to step up and participate in the research to make it happen.”

FORCE has a tool to help patients in their search to not only find a clinical trial, but also understand exactly what it entails. The Hereditary Breast and Ovarian Cancer (HBOC) Research Study Search Tool puts information in plain language including if a patient is eligible, their rights as a participant, as well as tips and information about safety. Patients can personalize their search by cancer type, stage, location, type of study and beyond. “You may not find a study specific to hereditary cancer, which is our goal to fill, but you may qualify for another study,” Friedman said.

Individuals may also find help from the more than 100 peer navigators who are available through FORCE to assist people who are looking for research and want to participate. “Studies are open and enrolling people across our entire community. That means prevention studies, not just treatment studies, and there is quality of life studies,” Friedman said. “We have tools to help you find studies enrolling people like you.”

It is clinical trials that not only advance research and lead to drug approvals, but can also help patients live longer. Victoria Seewaldt, M.D., a clinician and researcher from City of Hope in Duarte, California, discussed her involvement in the first clinical trials of Taxol (paclitaxel), which took place at the University of Washington, and the success story it became.

“People came from the whole Pacific Northwest and women who were dying and told they had no hope, they became involved in the Taxol trials and they lived,” Seewaldt said. “Not only did they live, they lived well. This is one of the reasons we need people to be a part of clinical trials.”

Looking to the future, the presenters are excited about many clinical trials in the genetic cancer space, including the BRCA Founder Outreach Study that aims to develop new models for genetic testing. I-PREDICT is another study that examines people of all tumor types and offers customized combinations with matching drugs.

“It’s important to find studies that you may be uniquely qualified to participate in,” Friedman said. “You may be the answer. You may be the key to answering a question about what it means for our community and how a drug may affect our community.”
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