Abstract PS5-05-18: How Susan G. Komen’s ShareForCures® Research Hub will connect researchers with real-world data shared by breast cancer patients and survivors in the United States

Abstract Background: To optimize care and improve outcomes for all breast cancer patients, multi-modal data need to be integrated with the experiences of patients. However, access to these datasets that reflect the diversity of patients is often limited and siloed within single institutions. To address these challenges, Susan G. Komen® (Komen) launched ShareForCures® (SFC), a direct-to-consumer, online, IRB-approved breast cancer research registry, designed to integrate real-world, longitudinal data from adults who have been diagnosed with breast cancer and live in the United States and to provide this data for research. Methods: We analyzed data from participants who enrolled in SFC within the first two years and developed the SFC Research Hub, which facilitates data exploration, cohort creation and data access application. A taskforce of research experts (clinical oncologists, translational scientists, and research advocates) provided guidance and feedback throughout the development of the SFC Research Hub by completing surveys, meeting with Komen staff, and participating in user testing. Results: From July 2023 to June 2025, 1,214 participants enrolled in SFC (median age = 55 years [range: 27-93], 99% women, 75% non-Hispanic White). Only four participants withdrew after enrollment, resulting in a retention rate of 99.7%. Participants were geographically dispersed across the United States, including Puerto Rico. Most participants received oncology care outside of NCI-designated comprehensive cancer centers and were diagnosed within the past five years. The majority of participants reported their first breast cancer diagnosis as invasive ductal carcinoma (57%), with 39% reporting ER+/HER2- disease. Notably, 18% of participants reported living with metastatic breast cancer (18%) and 14% experienced a recurrence (14%). All participants reported demographic and diagnostic information, and 53% of participants completed additional questionnaires and/or shared saliva samples for germline whole genome sequencing. Medical records were requested for 52% of participants, 30% were retrieved and curated, and 13% have access to a summary of their records in the platform. The SFC Research Hub was designed and developed with end users in mind, offering secure access to integrated, deidentified data shared by SFC participants. To access SFC data, researchers must agree to a code of conduct, acknowledge their institution’s data use agreement with Komen, and receive approval of their data access application describing their research project from Komen. In return, researchers will share their findings with SFC participants. Conclusions: Through SFC, Komen is creating a real-world database that connects researchers with data contributed by participants with diverse experiences. The SFC Research Hub is expected to launch in 2026, enabling researchers to leverage SFC data to enhance our understanding of real-world breast cancer patient experiences, ultimately accelerating discoveries and improving outcomes for all breast cancer patients. Citation Format: K. O. West, J. Epps, E. G. Marks, A. L. Gyden, K. A. Sabelko, M. L. Bondy, J. Jourquin. How Susan G. Komen’s ShareForCures® Research Hub will connect researchers with real-world data shared by breast cancer patients and survivors in the United States [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS5-05-18.