人们越来越认识到浸润性小叶乳腺癌 (ILC) 的独特病因、生物学和临床表现，但需要进行更多研究以确保将研究结果转化为管理和治疗指南。我们根据乳腺癌医生、实验室研究人员和患者的意见进行了一项调查，以分析当前对 ILC 的理解，并确定共识研究问题。来自 66 个国家/地区的 1774 名受访者自我认定为临床医生 (N = 413)、研究人员 (N = 376) 以及乳腺癌患者和倡导者 (N = 1120)，其中一些参与者属于多个类别。大多数医生报告对描述 ILC 和非特殊类型浸润性乳腺癌 (NST) 之间的差异非常/极其 (41%) 到中等 (42%) 有信心。组织学知识被认为很重要（73%）并影响治疗决策（51%），大多数人认为完善治疗指南是有价值的（76%）。 85% 的临床医生从未支持过允许对组织学亚型进行子集分析的临床试验，但大多数人会考虑这样做，并会参加 ILC 临床试验联盟。大多数实验室研究人员表示对描述 ILC 和 NST 之间的差异非常/非常（48%）到中等（29%）有信心。他们报告说，ILC 在大型基因组数据集中的呈现不充分，并且 ILC 模型也不充分。大多数人能够充分获取 ILC 患者的组织或血液。大多数患者和倡导者 (52%) 认为他们的医疗保健提供者没有充分解释 ILC 的独特特征。他们将 ILC 筛查/早期检测的改进以及更好的成像工具的确定作为首要研究重点。相比之下，研究人员和临床医生都将了解内分泌耐药性和确定可在临床试验中测试的新药物作为首要研究重点。总之，我们从国际医生、研究人员和患者/倡导者社区收集了信息，我们预计这些信息将为社区知情的合作研究议程奠定基础，目标是改善 ILC 患者的管理和个性化治疗。 © 2024。作者。

There is growing awareness of the unique etiology, biology, and clinical presentation of invasive lobular breast cancer (ILC), but additional research is needed to ensure translation of findings into management and treatment guidelines. We conducted a survey with input from breast cancer physicians, laboratory-based researchers, and patients to analyze the current understanding of ILC, and identify consensus research questions. 1774 participants from 66 countries respondents self-identified as clinicians (N = 413), researchers (N = 376), and breast cancer patients and advocates (N = 1120), with some belonging to more than one category. The majority of physicians reported being very/extremely (41%) to moderately (42%) confident in describing the differences between ILC and invasive breast cancer of no special type (NST). Knowledge of histology was seen as important (73%) and as affecting treatment decisions (51%), and most agreed that refining treatment guidelines would be valuable (76%). 85% of clinicians have never powered a clinical trial to allow subset analysis for histological subtypes, but the majority would consider it, and would participate in an ILC clinical trials consortium. The majority of laboratory researchers, reported being and very/extremely (48%) to moderately (29%) confident in describing differences between ILC and NST. They reported that ILCs are inadequately presented in large genomic data sets, and that ILC models are insufficient. The majority have adequate access to tissue or blood from patients with ILC. The majority of patients and advocates (52%) thought that their health care providers did not sufficiently explain the unique features of ILC. They identified improvement of ILC screening/early detection, and identification of better imaging tools as top research priorities. In contrast, both researchers and clinicians identified understanding of endocrine resistance and identifying novel drugs that can be tested in clinical trials as top research priority. In summary, we have gathered information from an international community of physicians, researchers, and patients/advocates that we expect will lay the foundation for a community-informed collaborative research agenda, with the goal of improving management and personalizing treatment for patients with ILC.© 2024. The Author(s).