Establishing Data Elements for the Paul Coverdell National Acute Stroke Registry Part 1: Proceedings of an Expert Panel Wendy A. Wattigney, MStat; Janet B. Croft, PhD, MPH; George A. Mensah, MD; Mark J. Alberts, MD; Timothy J. Shephard, RN, MSN, CNRN, CNS; Philip B. Gorelick, MD, MPH; David S. Nilasena, MD, MSPH, MS; David C. Hess, MD; Michael D. Walker, MD; Daniel F. Hanley, Jr, MD; Patti Shwayder; Meighan Girgus, MBA; Linda J. Neff, PhD, MSPH; Janice E. Williams, PhD, MPH; Darwin R. LaBarthe, MD, PhD; Janet L. Collins, PhD Background and Purpose—Stroke is the third-leading cause of death and a leading cause of disability in adults in the United States. In recent years, leaders in the stroke care community identified a national registry as a critical tool to monitor the practice of evidence-based medicine for acute stroke patients and to target areas for continuous quality of care improvements. An expert panel was convened by the Centers for Disease Control and Prevention to recommend a standard list of data elements to be considered during development of prototypes of the Paul Coverdell National Acute Stroke Registry. Methods—A multidisciplinary panel of representatives of the Brain Attack Coalition, professional associations, nonprofit stroke organizations, and federal health agencies convened in February 2001 to recommend key data elements. Agreement was reached among all participants before an element was added to the list. Results—The recommended elements included patient-level data to track the process of delivering stroke care from symptom onset through transport to the hospital, emergency department diagnostic evaluation, use of thrombolytic therapy when indicated, other aspects of acute care, referral to rehabilitation services, and 90-day follow-up. Hospital-level measures pertaining to stroke center guidelines were also recommended to augment patient-level data. Conclusions—Routine monitoring of the suggested parameters could promote community awareness campaigns, support quality improvement interventions for stroke care and stroke prevention in each state, and guide professional education in hospital and emergency system settings. Such efforts would reduce disability and death among stroke patients. (Stroke. 2003;34:151-156.) Key Words: data collection  registry  stroke assessment  stroke, acute  thrombolytic therapy S troke is the third-leading cause of death and a leading cause of serious, long-term disability in the United States; 4.5 million Americans and their families live with the disabling effects of stroke. 1 Aggressive treatment of patients with acute stroke could reduce disability if implemented in a timely fashion and used consistently throughout the United States. The recommended treatment of acute ischemic stroke includes the use of thrombolytic medications; tissue plasmin- ogen activator (tPA), approved by the US Food and Drug Administration in 1996, has been shown to reverse or limit the effects of acute stroke. 2 The use of tPA is low, however, in part because treatment must be administered within 3 hours of stroke onset to be effective. As such, only 3% of patients with stroke are being treated with the appropriate thrombolytic agent, 3,4 and only a fraction of stroke patients present to the hospital in time to receive a treatment that may make the difference between disability and full recovery. 5 The need to coordinate and streamline the clinical evalua- tion process for acute stroke patients was first documented in 1989 after a review of evaluations for 20 patients enrolled in a clinical trial of a fibrinolytic agent for acute ischemic stroke. 6 Since that time, clinical pathways, evidence-based practice guidelines, and significant advances in treatment and diagnostic imaging modalities have emerged to improve the quality of care delivered to victims of acute stroke. 2–5,7–10 These guidelines go beyond the need to increase the appro- Received May 22, 2002; final revision received August 2, 2002; accepted August 19, 2002. From the Centers for Disease Control and Prevention (W.A.W., J.B.C., G.A.M., L.J.N., J.E.W., D.R.L., J.L.C.), Atlanta, Ga; Northwestern University Medical School (M.J.A.), Chicago, Ill; Stroke Systems Consulting (T.J.S.), Dallas, Tex; Rush Medical College (P.B.G.), Chicago, Ill; Centers for Medicare and Medicaid Services (D.N.), Dallas, Tex; Medical College of Georgia and VA Medical Center (D.C.H.), Augusta, Ga; National Institute for Neurologic Disorders and Stroke (M.D.W.), Bethesda, Md; Johns Hopkins Medical Institute (D.E.H.), Baltimore, Md; National Stroke Association (P.S.), Denver, Colo; and American Stroke Association division of the American Heart Association (M.G.), Dallas, Tex. Correspondence to Wendy A. Wattigney, MStat, Centers for Disease Control and Prevention, 4770 Buford Hwy NE, Mailstop K-47, Atlanta, GA 30341-3717. E-mail Wwattigney@cdc.gov © 2003 American Heart Association, Inc. 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