PDF(Pubmed)
Abstract：
In April 2023, the National Cancer Institute offered a roadmap for cancer research to achieve Cancer Moonshot goals. To reach these goals requires making progress for all cancers, not just those that are most common. Achieving progress against rare cancers, as well as common cancers, requires involvement of large clinical research networks. In 2020, the Patient-Centered Outcomes Research Institute (PCORI) launched an initiative on Conducting Rare Disease Research using PCORnet, the National Patient-Centered Clinical Research Network. The purpose of this commentary is to introduce the broader community of cancer researchers to the PCORnet NET-PRO study (comparing the effects of different treatment approaches for neuroendocrine tumors on patient-reported outcomes) thereby demonstrating how researchers can use the PCORnet infrastructure to conduct large-scale patient-centered studies of rare cancers.
摘要：
2023年4月，美国国家癌症研究所为癌症研究提供了路线图，以实现癌症登月目标。为了实现这些目标，所有癌症都需要取得进展，不仅仅是那些最常见的。在对抗罕见癌症方面取得进展，以及常见的癌症，需要大型临床研究网络的参与。2020年，以患者为中心的结果研究所（PCORI）发起了一项使用PCRnet进行罕见疾病研究的倡议，全国以患者为中心的临床研究网络。本评论的目的是向更广泛的癌症研究人员介绍PCORnet-PRO研究（比较神经内分泌肿瘤的不同治疗方法对患者报告结果的影响），从而证明研究人员如何使用PCORnet基础设施进行以患者为中心的大规模罕见癌症研究。
