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Patients Discovering BreastCancer Trials.org

TON - October 2011 Vol 4 No 7 published on October 19, 2011 in Breast Cancer
Caroline Helwick

SAN ANTONIO—A rapidly growing, nationwide clinical trial matching service that is user-friendly for patients is enabling more patients to learn about and enroll in clinical trials, said Ellie Cohen, PhD, the program’s director. Cohen described the success of her program at the 33rd annual San Antonio Breast Cancer Symposium.

BreastCancerTrials.org is a web-based clinical trials matching service designed to empower patients and increase trial participation. Patients find trials looking for participants with their medical situation and connect with research sites. The site was launched in 2008 by the Carol Franc Buck Breast Care Center at the University of California San Francisco National Center of Excellence in Women’s Health in collaboration with Quantum Leap Healthcare Collaborative.

“Thousands of patients have adopted BreastCancerTrials.org and they use it to monitor trial opportunities. Our portfolio of breast cancer trials is diverse and growing,” Cohen said. “The purpose is to help patients who might not hear about trials from their doctors.”

The total number of visitors to date is more than 35,000. Of patients who start a health history, 61% complete it and are matched to trials and, of this group, 41% find at least one trial interesting enough to view the site contact information. Cohen does not have information as to how many patients actually enroll, and the numbers reflect only users who complete the application in one visit.

What the Site Offers

The online forms are customized depending on whether the user is recently diagnosed, managing metastatic disease, or has completed treatment. Women can choose whether to use the service anonymously or to save their health history by providing an e-mail address. They are matched with trials appropriate for their disease and can view research site information, including the closest research site and distance from the patient’s home.

The trial portfolio includes 450 trials, including 275 treatment trials, 84 psychosocial/supportive trials, 32 evaluating diagnosis/screening, 22 assessing preventive approaches, and 37 in other categories.

“Trials are for all patients,” Cohen stressed. “There is a big myth that they are only for patients who run out of options, but 40% of our trials are in the neoadjuvant and adjuvant setting. Wherever you are on the cancer journey, there is an opportunity to participate in a clinical trial. We want patients to consider trials as a routine option for their breast cancer care.”

Users can share their BreastCancer Trials.org history with participating research sites through the Secure Connnect message service. This en ables the first screening interview to be simplified as well as efficient, and the user can leave a personal message for the research site, such as, “I don’t have health insurance. Can I still enroll?”

The website now also has a weekly trial alert service that informs users when newly listed trials match their health history. The service has more than 1600 subscribers, and 85% of users who have a BreastCancerTrials.org history sign up for these alerts, she said.

“The trial alert service has been responsible for a 68% increase in users,” according to Cohen. “It’s promp t ing users to log in and view newly posted trials.”

During the first year, there were 4587 returning users and this increased to 7736 in year 2 after the trial alert service was launched.

Who Is Using BreastCancerTrials.org?

By disease stage, 440 of 1814 users (who saved their history) were stage 0 to III and recently diagnosed; 746 had completed treatment for stage 0 to III disease; and 628 were living with metastatic disease. Most current users are 50 to 69 years of age, with women aged 40 to 49 a close second.

Most users have been white (non-Hispanic) women with some college education. Fewer than 10% have no more than a high school degree. “Our early adopters are educated and white, but we hope to change this through outreach to underserved populations,” Cohen said.

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Last modified: April 27, 2020