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Susan G. Komen's ShareForCures®: a patient-engaged, nationwide breast cancer research registry
Jerome Jourquin1, James C Dickerson2, Emily G Marks1
1Susan G. Komen, DallasTXUSA.
Abstract:
ShareForCures® is a newly launched and growing dataset, crowd-sourced from participants, that comprises self-reported, clinical, and genomics data. ShareForCures seeks to advance breast cancer research by expanding patient participation in research therefore accelerating discoveries. It is designed to 1) provide opportunities for individuals who have or had breast cancer to participate in research; 2) create a longitudinal cohort that represents the diversity of individuals diagnosed with breast cancer; and 3) facilitate collaboration among researchers from various backgrounds and institutions to improve breast cancer care and outcomes for all. ShareForCures is a user-friendly, direct-to-consumer, online platform that collects demographic, genetic, and clinical information from or on behalf of breast cancer research participants. All adults in the United States diagnosed with breast cancer are eligible. As of September 30, 2025, 1,327 participants have enrolled. The platform aims to enroll 2,500 diverse participants by 2027, with a long-term goal of reaching 10,000 participants in the next decade. With ShareForCures, Komen is engaging a diverse population of individuals with breast cancer, including those from groups typically underrepresented in research, to drive discoveries that benefit everyone. With the first research projects already leveraging the dataset, ShareForCures has the potential to become a unique national platform for generating insights and real-world data that will drive patient-centered research.
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