Abstract P1-10-02: YSC research think tank to determine top priority research needs in young breast cancer patients

Abstract

Abstract Background Each year, approximately 13,110 women under age 40 are diagnosed with breast cancer, with 1,200 dying of the disease. There are approximately 250,000 breast cancer survivors living in the US today who were diagnosed under 40. Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Breast cancer in women under 40 is rarely studied. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. It is a strategic goal of YSC to increase the amount of quality research on young women, to define the greatest research needs for young women with breast cancer, and to advocate these needs to doctors and researchers. In 2001, YSC convened the “Medical Research Symposium on Young Women and Breast Cancer,” consisting of seven researchers from the New York City area from all of the major cancer disciplines. The resulting white paper set an initial YSC agenda on both the current state and future direction for research in young women. In 2012, YSC decided to revisit this agenda, review what progress has been made and what priority research areas remain. Methods In 2012, work on the YSC Research Think Tank (RTT) began. Our goal was to identify the most pressing research questions that would improve the quality and quantity of life for young women diagnosed with breast cancer. YSC assembled doctors, researchers and advocates to focus on six areas of particular importance to its young constituents: risk factors; treatment; metastasis; quality of life; fertility; and pregnancy. Each participant was assigned to a workgroup based on their stated interest and expertise. A young survivor advocate led and coordinated each workgroup. In mid- 2012, these groups met remotely to review the state of the research in each of their assigned areas. They compiled detailed reports summarizing their work and listed the research gaps pertinent to young women. In February, 2013, all RTT participants met in Arlington, Virginia for a two day in-person meeting. Each workgroup briefly presented their work to date and displayed a large poster reflecting what they believed to be the most pressing research questions. During day two of the RTT, attendees rotated through the assigned rooms of three workgroups (other than their own), discussing more fully each of the items that workgroup identified as a research priority. Participants placed each priority on a graph, reflecting how that priority would impact quality and quantity of life for young women. Each workgroup re-assembled and discussed the feedback they received, selecting their top three research priorities. Results Young women with breast cancer remain an understudied population. Taking the knowledge gained and recommendations received at the RTT meeting, YSC is currently drafting a white paper and updated research agenda to be finalized by spring, 2014. These documents will be published and promoted in an effort to focus the research community on the unique issues of young women with breast cancer to extend their quantity and improve their quality of life. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P1-10-02.