Design and Rationale of the Metastatic Renal Cell Carcinoma (MaRCC) Registry: A Prospective Academic and Community-Based Study of Patients With Metastatic Renal Cell Cancer

The Metastatic Renal Cell Cancer Registry, a large, nationally representative, prospective registry of patients with metastatic renal cell carcinoma (mRCC), aims to understand real-world treatment patterns and outcomes of patients with mRCC in routine clinical practice across the United States. This observational study is designed to enroll 500 patients with previously untreated mRCC from approximately 60 academic and community treatment sites; as of December 7, 2016, 500 patients have enrolled at 54 sites. Key endpoints include real-world data on reasons for treatment initiation and discontinuation; treatment regimens; disease progression; patient-reported outcomes; and healthcare resource utilization in this patient population.

转移性肾细胞癌登记库（Metastatic Renal Cell Cancer Registry）是一项覆盖全美、具有代表性的大型转移性肾细胞癌（metastatic renal cell carcinoma，mRCC）患者前瞻性登记研究，旨在探明美国临床常规实践中转移性肾细胞癌患者的真实世界治疗模式与转归情况。本观察性研究计划从约60家学术与社区诊疗机构招募500名初治转移性肾细胞癌患者；截至2016年12月7日，已有54家机构完成500例患者的入组。核心研究终点涵盖该患者队列的治疗启动与终止原因、治疗方案、疾病进展、患者报告结局（patient-reported outcomes）以及医疗资源利用情况等真实世界数据。