Standardizing the Structure of Stroke Clinical and Epidemiologic Research Data

The National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) Project

Stroke.ahajournals.org: Jeffrey L. Saver, MD; Steven Warach, MD, PhD; Scott Janis, PhD; Joanne Odenkirchen, MPH; Kyra Becker, MD; Oscar Benavente, MD; Joseph Broderick, MD; Alexander W. Dromerick, MD; Pamela Duncan, PhD; Mitchell S.V. Elkind, MD; Karen Johnston, MD; Chelsea S. Kidwell, MD; James F. Meschia, MD; Lee Schwamm, MD; for the National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element Working Group, Feb. 2, 2012.

Background and Purpose—The National Institute of Neurological Disorders and Stroke initiated development of stroke-specific Common Data Elements (CDEs) as part of a project to develop data standards for funded clinical research in all fields of neuroscience. Standardizing data elements in translational, clinical, and population research in cerebrovascular disease could decrease study start-up time, facilitate data sharing, and promote well-informed clinical practice guidelines.

Methods—A working group of diverse experts in cerebrovascular clinical trials, epidemiology, and biostatistics met regularly to develop a set of stroke CDEs, selecting among, refining, and adding to existing, field-tested data elements from national registries and funded trials and studies. Candidate elements were revised on the basis of comments from leading national and international neurovascular research organizations and the public. Read More

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