Bhakhri Priyanka, Phelps Kolbe, Gómez Tejeda Zañudo Jorge, Gwozdz Erin, Ko Sophia, Hendrickson Taisha, Anastasio Elana, Diehl Diane M, Painter Corrie A, McGillicuddy Mary
Count Me In, Cambridge, MA, USA.
The Broad Institute of MIT and Harvard, Cambridge, MA, USA.
Ther Adv Rare Dis. 2024 Dec 16;5:26330040241304440. doi: 10.1177/26330040241304440. eCollection 2024 Jan-Dec.
Approximately 25% of cancer patients are diagnosed with rare cancers and face unique challenges. Decentralized patient-partnered research efforts, like Count Me In provide an avenue for patients to participate in research that overcomes key barriers to address disparities in rare cancer research to accelerate discovery.
Projects in metastatic breast cancer (The Metastatic Breast Cancer Project; MBCproject) and angiosarcoma (The Angiosarcoma Project; ASCproject) highlight disparities that exist for all cancer patients and underscore those that are compounded for rare cancer patients.
Through Count Me In's research platform, patients visit a website to enroll in the study and complete surveys, which allows us to access their medical records and biospecimens. Clinically annotated sequencing data are de-identified and released on research platforms.
MBCproject and ASCproject data were analyzed to identify differences between patients with a more common and rare cancer, respectively. The analysis included outreach strategies, patient-reported themes, and distance traveled for care.
As of September 28, 2023, 3742 patients have enrolled in MBCproject and 491 patients have enrolled in the ASCproject from across the United States and Canada. Outreach strategies were tailored to resource availability. Using survey information, it was observed that patients with a rare cancer (angiosarcoma) traveled longer distances to receive care than those with a more common cancer (metastatic breast cancer) for three major cancer centers. Patients with rare and common cancers highlighted different themes when asked about their disease experience. Themes like misdiagnosis and discontent with resource availability came up more often for rare cancer patients. Data sharing and collaboration in angiosarcoma research enabled rapid discoveries with clinical impact.
Count Me In's platform has led to unprecedented data generation and findings in rare cancer through partnering with patients. Directly engaging with patients to generate and share data while emphasizing collaboration sets the foundation for a more equitable future.
约25%的癌症患者被诊断为患有罕见癌症，并面临独特挑战。像“算我一份”这样的去中心化患者参与的研究工作，为患者参与研究提供了一条途径，克服了关键障碍，以解决罕见癌症研究中的差异问题，加速发现进程。
转移性乳腺癌项目（The Metastatic Breast Cancer Project；MBCproject）和血管肉瘤项目（The Angiosarcoma Project；ASCproject）突出了所有癌症患者存在的差异，并强调了罕见癌症患者更为复杂的差异。
通过“算我一份”的研究平台，患者访问网站参与研究并完成调查问卷，这使我们能够获取他们的医疗记录和生物样本。经过临床注释的测序数据经过去识别处理后在研究平台上发布。
对MBCproject和ASCproject的数据进行分析，分别确定患有较常见癌症和罕见癌症的患者之间的差异。分析包括推广策略、患者报告的主题以及就医路程。
截至2023年9月28日，来自美国和加拿大各地的3742名患者参与了MBCproject，491名患者参与了ASCproject。推广策略根据资源可用性进行了调整。利用调查信息发现，对于三个主要癌症中心而言，患有罕见癌症（血管肉瘤）的患者比患有较常见癌症（转移性乳腺癌）的患者就医路程更远。当被问及疾病经历时，患有罕见癌症和常见癌症的患者突出了不同的主题。误诊和对资源可用性不满等主题在罕见癌症患者中出现得更为频繁。血管肉瘤研究中的数据共享与合作促成了具有临床意义的快速发现。
“算我一份”的平台通过与患者合作，在罕见癌症研究中带来了前所未有的数据生成和研究成果。直接与患者合作生成和共享数据，同时强调合作，为更公平的未来奠定了基础。
