title: The thrombotic microangiopathy Registry of North America: A United States multi-institutional TMA network.
abstract: The thrombotic microangiopathy (TMA) Registry Network of North America (TRNA) is a collaborative network organized for the purpose of developing a multi-institutional registry and network to conduct clinical studies in a rare patient population. The TRNA was founded in 2013 by four academic medical centers (Columbia University Medical Center, Duke University Medical Center, University of Alabama at Birmingham, and University of Pennsylvania) to develop a national and demographically diverse dataset of patients with TMA. A clinical database was developed by network members using REDCap (Research Electronic Data Capture), a web-based database developed for clinical research. To facilitate rapid Institutional Review Board (IRB) approval at multiple sites, the TRNA utilized IRBshare, a streamlined IRB process to allow patient recruitment and enrollment into the TMA registry. This article reviews the process used to establish the TRNA network and discusses the significance of the first multi-institutional clinical apheresis network developed in the United States. J. Clin. Apheresis 31:448-453, 2016. © 2015 Wiley Periodicals, Inc.
authors.affiliation: Division of Hematology, Department of Medicine, Duke University Medical Center, Durham, North Carolina. ara.metjian@duke.edu.
authors.forename: Ara
authors.initials: A
authors.lastname: Metjian
authors.affiliation: Division of Transfusion Medicine, Department of Pathology and Cell Biology, Columbia University Medical Center, New York, New York.
authors.forename: Yvette C
authors.initials: YC
authors.lastname: Tanhehco
authors.affiliation: Department of Laboratory Medicine and Therapeutic Pathology, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Nicole
authors.initials: N
authors.lastname: Aqui
authors.affiliation: Department of Laboratory Medicine and Therapeutic Pathology, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Vijay G
authors.initials: VG
authors.lastname: Bhoj
authors.affiliation: Department of Laboratory Medicine and Therapeutic Pathology, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Lita
authors.initials: L
authors.lastname: Jamensky
authors.affiliation: Department of Pathology, University of Alabama at Birmingham, Birmingham, Alabama.
authors.forename: Marisa B
authors.initials: MB
authors.lastname: Marques
authors.affiliation: Division of Hematology, Department of Medicine, Duke University Medical Center, Durham, North Carolina.
authors.forename: Oluwatoyosi
authors.initials: O
authors.lastname: Onwuemene
authors.affiliation: Department of Pathology, University of Alabama at Birmingham, Birmingham, Alabama.
authors.forename: Huy P
authors.initials: HP
authors.lastname: Pham
authors.affiliation: Division of Hematology, Department of Medicine, Duke University Medical Center, Durham, North Carolina.
authors.forename: Gowthami M
authors.initials: GM
authors.lastname: Arepally
mesh_terms: D000046:Academic Medical Centers; D001781:Blood Component Removal / Q000379:methods*; D016208:Databases, Factual; D006801:Humans; D009656:North America; D012042:Registries; D057049:Thrombotic Microangiopathies / Q000628:therapy*; D014481:United States
keywords: IRBshare; REDCap; Registry; TMA; TTP