Establishing data elements for the Paul Coverdell National Acute Stroke Registry: Part 1: Proceedings of an expert panel

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.