A multidimensional approach to improve care and outcomes for people with inflammatory breast cancer (IBC).

Abstract

e13173 Background: Inflammatory Breast Cancer (IBC) is a rare and highly aggressive form of advanced breast cancer. IBC is largely a subjective, clinical diagnosis that is challenging to identify due to unique skin changes and breast swelling, often resembling a breast infection. Additionally, a general lack of awareness about IBC in the clinical and patient communities contributes to delays in diagnosis and treatment. Together, these issues hinder IBC research advancements, leaving patients with limited treatment options and poor prognoses. Methods: To address these challenges, Komen leveraged its internal programs, in-house capabilities, partnerships and the collective expertise of renowned clinicians, researchers and patient advocates to launch a three-pronged approach: 1) improve IBC diagnosis, 2) accelerate IBC research and 3) educate the clinical and patient communities about IBC. Ongoing strategic involvement with various IBC stakeholders in these major areas has enabled new and inventive solutions to support clinicians and patients. Results: To support clinicians in recognizing and more effectively diagnosing IBC, the IBC Scoring System Online Tool (IBC Online Tool) was developed. This easy-to-use, web-based resource ( komen.org/ibc-calc ) allows for the quantitative assessment of a patient’s likelihood of IBC. The tool is based on a set of proposed common diagnostic criteria ( PMC8926970 ) identified by a panel of experts within the Susan G. Komen-IBCRF IBC Collaborative in partnership with the Milburn Foundation and has recently undergone scientific validation. To support the use of this important tool and address critical knowledge gaps in IBC diagnosis and treatment, informational pamphlets were developed with IBC experts and patient advocates for clinician and patient communities. These materials have been instrumental in driving awareness about IBC and Komen’s resource webpage ( komen.org/ibc ) wherein the online tool has been accessed by over 3000 users across the U.S. and in more than 70 countries worldwide (as of 12/31/24). To accelerate research in IBC, Komen has invested over $10M in IBC research, supporting investigators at all career levels. These strategic investments have supported new IBC preclinical models, diagnostic tools and the discovery of critical insights needed to advance the field. Additionally, using Komen’s research registry, ShareForCures (SFC), people with IBC across the U.S can share their data to help drive innovative research and improve outcomes. IBC patients within the registry currently represent 1.9% of all SFC participants. Conclusions: Through a multidimensional, collaborative approach, significant strides have been made to advance IBC research and care including the development of novel tools and resources. Continued efforts in these areas should ultimately lead to improved care and outcomes for people with IBC.