Trial-Matching Service for Breast Cancer Patients Takes Personalized Approach

UCSF has long been known for providing top-quality education and exceptional patient care. But in a true sign of the times, the University name may soon be associated with another type of service — online matchmaking — thanks to the recent expansion of BreastCancerTrials.org, a nonprofit, nationwide service that pairs breast cancer patients, survivors and those who are at risk with clinical trials. The free service, which originated at UCSF, is operated by Quantum Leap Healthcare Collaborative with ongoing research and development by the UCSF Center of Excellence for Breast Cancer Care (COE-BCC). It is the country’s only trial matching service dedicated exclusively to breast cancer, which kills more than 40,000 American women every year. "BreastCancerTrials.org is an excellent example of the power of partnership between researchers, clinicians and patients in expanding opportunities for women and men with breast cancer," says Nancy Milliken, MD, vice dean of the UCSF School of Medicine and director of the UCSF National Center of Excellence in Women's Health. "We are proud that what was developed and piloted at UCSF is now bringing benefits to individuals nationwide." BreastCancerTrials.org allows patients to self-report their health history in order to hone in on the trials that correspond to their personal health situation. It also offers patient-friendly information about more than 160 ongoing clinical trials at more than 1,500 medical facilities throughout the country. “Unlike other sites I’ve found, this one actually asks you questions and wants to know your story and your health status,” said Valerie Gardner, who discovered BreastCancerTrials.org shortly after her breast cancer diagnosis in 2006. “Instead of me always doing the searching and usually getting nowhere, the site did the work for me.” Gardner, who lives in Walnut Creek and is currently cancer-free, has participated in two clinical trials at UCSF — one of which she found through BreastCancerTrials.org — and hopes to enroll in more in the future.

Trial Alert Service

That will be easier now, thanks to the website’s new Trial Alert Service feature, which enables those who register to receive automatic notification each time a new trial matching their profile is added to the main database. “If you had to constantly search multiple websites yourself just to find out what’s new out there, you’re just not going to do that,” said Muriel Amsden, a breast cancer survivor who recently wrapped up a UCSF-based clinical trial she found using the BreastCancerTrials.org service. In addition to the Trial Alert Service, the site has also added a one-of-a-kind SecureCONNECT feature, a confidential platform from which patients can contact participating research sites and invite trial coordinators to view their personal information on BreastCancerTrials.org and discuss potential eligibility for a trial. The new feature “sets the stage for a productive first conversation between patients and research coordinators and allows patients to focus their time and energy on the trials for which they are most likely to be eligible,” said BreastCancerTrials.org program director Elly Cohen, PhD. “At the same time,” she said, “everything is secure and under the patient’s control.” By creating a convenient, personalized experience for its users, BreastCancerTrials.org aims to transform the way clinical trials are perceived and increase participation. The American Cancer Society estimates that 3 to 5 percent of adult cancer patients nationwide currently enroll in clinical trials. Gardner said her whole perspective on clinical trials changed after discovering BreastCancerTrials.org.

Translating Discoveries

“So many times during a cancer journey, you feel like you’re a piece of product moving through a pipeline. It’s very depersonalized,” she said. “But [BreastCancerTrials.org] makes you feel as though somebody’s reaching out to you. It’s kind of like a dating service: ‘Find the trial of your dreams!’” In addition to benefitting the individual participants, clinical trial participation holds the key to speeding up the translation of innovative lab discoveries into widely used treatments — a central element of UCSF Strategic Plan. “By raising awareness and encouraging individuals affected by breast cancer to learn more about their options for participation in clinical trials, we hope to increase the rate at which new treatments and procedures are developed and made available at all stages of disease,” said Laura Esserman, MD, MBA, director of the UCSF Carol Franc Buck Breast Care Center, which encompasses the COE-BCC and is part of the UCSF Helen Diller Family Comprehensive Cancer Center. Amsden, who has been cancer-free since undergoing chemotherapy, a mastectomy and reconstructive surgery three years ago, said she views clinical trials as a way to “pay it forward.” “To get the treatment I’ve gotten so far, other women had to do trials,” she said in a phone interview from her home in Moraga. “I benefitted from what they did, and now I can potentially help others by doing the same thing.” “A lot of people wonder why I don’t just donate money,” she added. “Well, donating money is all well and good, but if there isn’t anybody to perform research on, then all the money in the world isn’t going to help.” BreastCancerTrials.org was launched in 2005 as a pilot project by the COE-BCC and the National Cancer Institute. The regional pilot received an overwhelming response, and in 2008, the Safeway Foundation, the philanthropic arm of Safeway Inc., gave the UCSF Breast Care Center an initial $1 million contribution to launch the website service nationwide. Joanne Tyler, one of two breast cancer patients-turned-advocates who first conceived of BreastCancerTrials.org, said she is thrilled but not surprised by its success. “We certainly always envisioned it becoming a nationwide service,” she said of herself and her friend and collaborator Joan Schreiner, who passed away in 2005 and who Tyler credits with the original idea for a website that matched patients with clinical trials. From the beginning, Tyler and Schreiner wanted to create a service that was nonprofit and free of charge for patients, and they saw an ideal partner in UCSF, Tyler said. “We’re very grateful and lucky to have had UCSF involvement,” Tyler said. “At a time that’s a crisis in patients’ lives, it’s horrible to have to paw through the overwhelming amount of information out there. We saw this site as a solution to that problem.”

Related Links:

BreastCancerTrials.org UCSF Carol Franc Buck Breast Care Center UCSF Helen Diller Family Comprehensive Cancer Center Revolutionary Statewide UC Collaboration Targets Breast Cancer UCSF News Release, Sept. 29, 2009