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Definition and Prioritization of Data Elements for Cohort Studies and Clinical Trials on Patients with Unruptured Intracranial Aneurysms: Proposal of a Multidisciplinary Research Group

2019; Springer Science+Business Media; Volume: 30; Issue: S1 Linguagem: Inglês

10.1007/s12028-019-00729-0

1556-0961

K. Hackenberg, Ale Algra, Rustam Al‐Shahi Salman, Juhana Frösén, David Hasan, Seppo Juvela, David J. Langer, Philip M. Meyers, Akio Morita, Gabriël J.E. Rinkel, Nima Etminan, José I. Suárez, R. Loch Macdonald, Sepideh Amin‐Hanjani, R. Dale Brown, Airton Leonardo de Oliveira Manoel, Colin P. Derdeyn, Nima Etminan, E. Keller, Peter D. LeRoux, Stephan A. Mayer, Akio Morita, Gabriël J.E. Rinkel, Daniel Rufennacht, Martin N. Stienen, James Torner, Mervyn D.I. Vergouwen, George Kwok Chu Wong, Philippe Bijlenga, Nerissa Ko, Cameron G. McDougall, J Mocco, Yuuichi Murayama, Marieke J. H. Werner, Rahul Damani, Joseph Broderick, Rajat Dhar, Edward C. Jauch, Peter J. Kirkpatrick, Reneé H. Martin, Susanne Muehlschlegel, Tatsushi Mutoh, Paul Nyquist, DaiWai M. Olson, Jorge Mejía-Mantilla, Mathieu van der Jagt, Nicholas C. Bambakidis, Gretchen M. Brophy, Ketan R. Bulsara, Jan Claassen, E. Sander Connolly, S. Alan Hoffer, Brian L. Hoh, Robert G. Holloway, Adam G. Kelly, Peter Nakaji, Alejandro A. Rabinstein, Peter Vajkoczy, Henry H. Woo, Gregory J. Zipfel, Sherry Chou, Sylvain Doré, Aaron S. Dumont, Murat Günel, Hidetoshi Kasuya, Alexander Roederer, Ynte M. Ruigrok, Paul Vespa, Asita Simone Sarrafzadeh-Khorrasani, K. Hackenberg, John Huston, Timo Krings, Giuseppe Lanzino, Philip M. Meyers, Max Wintermark, Janis J. Daly, Christopher S. Ogilvy, Denise H. Rhoney, Yvo B.W.E.M. Roos, Adnan H. Siddiqui, Ale Algra, Juhanna Frösen, David Hasan, Seppo Juvela, David J. Langer, Rustam Al‐Shahi Salman, Daniel Hänggi, Tom A. Schweizer, Johanna M. A. Visser‐Meily, Liz Amos, Christophe Ludet, Claudia S. Moy, Joanne Odenkirchen, Sherita Alai, Joy Esterlitz, Kristen Joseph, Muniza Sheikh,

Cerebrovascular and Carotid Artery Diseases

Variability in usage and definition of data characteristics in previous cohort studies on unruptured intracranial aneurysms (UIA) complicated pooling and proper interpretation of these data. The aim of the National Institute of Health/National Institute of Neurological Disorders and Stroke UIA and Subarachnoid Hemorrhage (SAH) Common Data Elements (CDE) Project was to provide a common structure for data collection in future research on UIA and SAH.This paper describes the development and summarization of the recommendations of the working groups (WGs) on UIAs, which consisted of an international and multidisciplinary panel of cerebrovascular specialists on research and treatment of UIAs. Consensus recommendations were developed by review of previously published CDEs for other neurological diseases and the literature on UIAs. Recommendations for CDEs were classified by priority into 'Core,' 'Supplemental-Highly Recommended,' 'Supplemental,' and 'Exploratory.'Ninety-one CDEs were compiled; 69 were newly created and 22 were existing CDEs. The CDEs were assigned to eight subcategories and were classified as Core (8), Supplemental-Highly Recommended (23), Supplemental (25), and Exploratory (35) elements. Additionally, the WG developed and agreed on a classification for aneurysm morphology.The proposed CDEs have been distilled from a broad pool of characteristics, measures, or outcomes. The usage of these CDEs will facilitate pooling of data from cohort studies or clinical trials on patients with UIAs.