Gabriel Rinkel1, Nima Etminan2, Katharina A M Hackenberg3, Ale Algra4, Rustam Al-Shahi Salman5, Juhana Frösen6, David Hasan7, Seppo Juvela8, David Langer9, Philip Meyers10, Akio Morita11. 1. Brain Center Rudolf Magnus, Department of Neurology and Neurosurgery and Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht, Utrecht, The Netherlands. 2. Department of Neurosurgery, University Hospital Mannheim, University of Heidelberg, Mannheim, Germany. 3. Department of Neurosurgery, University Hospital Mannheim, University of Heidelberg, Mannheim, Germany. katharina.hackenberg@umm.de. 4. Brain Center Rudolph Magnus, Department of Neurology and Neurosurgery, and the Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands. 5. Centre for Clinical Brain Sciences, University of Edinburgh, Chancellor's Building, Edinburgh, UK. 6. Department of Neurosurgery, Kuopio University Hospital, Kuopio, Finland. 7. Department of Neurosurgery, University of Iowa Carver College of Medicine, Iowa City, IA, USA. 8. Department of Clinical Neurosciences, University of Helsinki, Helsinki, Finland. 9. Department of Neurosurgery, Hofstra Northwell School of Medicine, and Northwell Health, Lenox-Hill Hospital, New York, NY, USA. 10. Departments of Neurosurgery and Radiology, Columbia University Medical Center, New York, NY, USA. 11. Department of Neurological Surgery, Nippon Medical School, Bunkyo-ku, Tokyo, Japan.
Abstract
INTRODUCTION: 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. METHODS: 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.' RESULTS: 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. CONCLUSION: 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.
INTRODUCTION: 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. METHODS: 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.' RESULTS: 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. CONCLUSION: 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.
Entities:
Keywords:
Common data elements; Data standardization; Morphology; Risk factors; Unruptured intracranial aneurysms
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