title: 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.
abstract: 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.
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Nrupen A
authors.initials: NA
authors.lastname: Bhavsar
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Michael R
authors.initials: MR
authors.lastname: Harrison
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Bradford R
authors.initials: BR
authors.lastname: Hirsch
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Patricia
authors.initials: P
authors.lastname: Creel
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Steve P
authors.initials: SP
authors.lastname: Wolf
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Greg P
authors.initials: GP
authors.lastname: Samsa
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.|b Pfizer Inc. , New York , New York , USA.
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
authors.affiliation: b Pfizer Inc. , New York , New York , USA.
authors.forename: Ronit
authors.initials: R
authors.lastname: Simantov
authors.affiliation: b Pfizer Inc. , New York , New York , USA.
authors.forename: Azah
authors.initials: A
authors.lastname: Borham
authors.affiliation: a Duke University Medical Center , Durham , North Carolina , USA.
authors.forename: Daniel J
authors.initials: DJ
authors.lastname: George
mesh_terms: D002292:Carcinoma, Renal Cell / Q000556:secondary* / Q000628:therapy*; D003153:Community Health Services / Q000706:statistics & numerical data / Q000639:trends*; D018450:Disease Progression; D006295:Health Resources / Q000706:statistics & numerical data / Q000639:trends; D006801:Humans; D007680:Kidney Neoplasms / Q000473:pathology* / Q000628:therapy*; D000071066:Patient Reported Outcome Measures; D010818:Practice Patterns, Physicians' / Q000639:trends*; D011446:Prospective Studies; D011788:Quality of Life; D012042:Registries; D012107:Research Design; D013997:Time Factors; D016896:Treatment Outcome; D014481:United States
keywords: Metastatic renal cell carcinoma; Observational study; Patient Reported Outcomes; Real-world data