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Abstract Inflammatory Breast Cancer (IBC) is a rare, highly aggressive form of advanced breast cancer that has been historically challenging to diagnose due to its ambiguous clinical nature. A general lack of awareness about IBC within the clinical and patient communities further contributes to delays in diagnosis and treatment. Together, these issues hinder IBC research advancements, leaving patients with limited treatment options and poor prognoses. To address these challenges, Susan G. Komen partnered with IBCRF and the Milburn Foundation to form the IBC Collaborative and launch a multidimensional initiative, aimed at tackling systemic barriers to the advancement of IBC research and care. Early efforts of this initiative prioritized the development of the IBC Scoring System, a quantitative diagnostic scoring rubric for IBC. Available as an easy-to-use online tool (komen.org/ibc-calc), the IBC Scoring System has been steadily gaining global adoption, through the Collaborative’s targeted efforts to raise awareness including dissemination of informational pamphlets for clinician and patient communities. To date, the tool has been used by over 5300 users in more than 100 countries. Additionally, IBC-dedicated clinics, multi-institutional IBC networks and community oncology centers have reported using the tool to support clinical decision making when considering ambiguous patient cases. Recent validation studies have demonstrated that the system can distinguish IBC from non-IBC patients (AUC-ROC 0.84; 95% CI: 0.82 - 0.87) (Lynce et al. JNCI. 2025). Efforts to further enhance the clinical utility of this important diagnostic system are underway and funded by Komen. With a diagnostic system in hand, Komen led advocacy efforts to pursue formal disease recognition through the creation of IBC-specific diagnosis codes. By engaging with the U.S Centers for Disease Control and Prevention (CDC), three unique ICD-10-CM diagnosis codes for IBC (C50.A0, C50.A1, and C50.A2) were approved. Effective October 2025, the widespread utilization of these codes is expected to enhance the ability to track IBC incidence by facilitating inclusion in national health datasets and to improve the coordination of multidisciplinary care for IBC patients. In parallel, a task force was formed to identify current scientific barriers limiting research advancements in IBC and to provide tangible recommendations to address them. Through a series of structured working meetings, three overarching areas emerged as needing significant investigation and investment to drive progress in the biology of IBC: (1) onset and development, (2) detection and monitoring and (3) metastatic dissemination. The group identified a dearth of available IBC tools and resources as key barriers to progress with data silos and the lack of open-access data remaining major obstacles in the field. Additionally, the group prioritized research areas with high potential to improve the understanding and management of IBC. This integrative approach has made significant strides in supporting IBC research, diagnosis and care through the development of a validated diagnostic tool, the establishment of ICD-10-CM codes for IBC, and by defining critical research gaps and prioritizing resolutions. Continued momentum in these areas should ultimately lead to improved outcomes for people with IBC. Citation Format: L. J. Anstine, A. A. Erwin, M. L. Guthrie, H. D. Baker, S. S. Badve, M. L. Alpaugh, K. A. Sabelko, G. M. Zinser. An integrative approach to improving outcomes for inflammatory breast cancer (IBC) patients: creating a diagnostic tool, advocating for ICD-10-CM codes, and establishing a task force to address critical research gaps [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 PS5-11-17.
Published in: Clinical Cancer Research
Volume 32, Issue 4_Supplement, pp. PS5-11