The Thrombotic Microangiopathy Registry of North America: A United States Multi-Institutional TMA Network Ara Metjian, 1 * Yvette C. Tanhehco, 2 Nicole Aqui, 3 Vijay G. Bhoj, 3 Lita Jamensky, 3 Marisa B. Marques, 4 Oluwatoyosi Onwuemene, 1 Huy P. Pham, 4 and Gowthami M. Arepally 1 1 Division of Hematology, Department of Medicine, Duke University Medical Center, Durham, North Carolina 2 Division of Transfusion Medicine, Department of Pathology and Cell Biology, Columbia University Medical Center, New York, New York 3 Department of Laboratory Medicine and Therapeutic Pathology, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania 4 Department of Pathology, University of Alabama at Birmingham, Birmingham, Alabama 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 Univer- sity 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 data- base was developed by network members using REDCap (Research Electronic Data Capture), a web-based data- base 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 signifi- cance of the first multi-institutional clinical apheresis network developed in the United States. J. Clin. Apheresis 00:000–000, 2015. V C 2015 Wiley Periodicals, Inc. Key words: TMA; TTP; IRBshare; REDCap; Registry INTRODUCTION The thrombotic microangiopathies (TMAs) are rare, life-threatening thrombotic disorders of diverse etiolo- gies characterized by the presence of microangiopathic hemolytic anemia, thrombocytopenia, and thrombotic occlusion of the microvasculature [1]. With the excep- tion of thrombotic thrombocytopenic purpura (TTP) and atypical HUS (aHUS), the optimal management of other TMAs is unknown. Systematic studies of TMA have been difficult to perform due to their rare occur- rence, disease heterogeneity, and lack of an organized research network in the United States. While a multi- institutional approach has been used in Europe and Canada, (e.g., The Canadian Apheresis Group [2], the United Kingdom Thrombocytopenic Purpura Registry [3], and The TMA Registry of the French Reference Center [4]), no such organization exists in the United States. In the United States, the Oklahoma TTP-HUS regis- try has been an invaluable clinical resource on the epi- demiology, disease manifestations, laboratory aspects, and clinical management of the TMAs. Established in 1989 by Dr James George, the Oklahoma TTP-HUS registry is based out of the Oklahoma Blood Institute (OBI), which is the sole provider for therapeutic plasma exchange (TPE) in 58 of the 77 counties in Oklahoma, and thus, all patients referred for TPE are eligible for this registry [5]. Notwithstanding the signif- icant contributions of the Oklahoma TTP-HUS registry, clinical data from this registry and other similar single- institution registry sites are invariably subject to slow rates of accrual, a geographically restricted patient pop- ulation and institutional preferences for diagnostic eval- uation and/or treatment of disease. To overcome these limitations of single institutional registries, we have established a multi-institutional registry called the TMA Registry of North America (TRNA), which is composed of investigators from major academic centers, including Columbia University *Correspondence to: Ara Metjian; Box #3422 100, Trent Drive, Duke University Medical Center, Durham, NC 27710, USA. E-mail: ara.metjian@duke.edu. Received 9 August 2015; Accepted 13 October 2015 Published online 00 Month 2015 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/jca.21437 V C 2015 Wiley Periodicals, Inc. Journal of Clinical Apheresis 00:00–00 (2015)