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This chapter reviews various data sources available for observational research, examines their strengths and limitations, and identifies opportunities for further improving observational databases by integrating data collected from different sources. The focus is on observational research using existing databases.

Clinical Registries

Clinical registries have an important role in observational research. In this section, we first review an array of the available clinical registries that are closely or broadly relevant to cardiovascular disease (Table 11–1). We then summarize the strengths and limitations of clinical registries for observational study.

Table 11–1 Evolution of Cardiovascular Clinical Registries

American Heart Association—Get with the Guidelines

Get With The Guidelines® (GWTG) is a national cardiovascular disease registry and quality improvement program developed by the American Heart Association (AHA) and American Stroke Association. The GWTG registry includes three modules—one each for coronary artery disease, heart failure, and stroke (1)—and one outpatient program (2). GWTG uses a Web-based patient management tool (Outcomes, Cambridge, MA) to abstract detailed clinical data, including patient demographics, medical history, symptoms on arrival, in-hospital treatment and events, contraindications to medications, laboratory findings, discharge treatment and counseling, and patient disposition from more than 381,000 patients in the heart failure module and more than 1,000,000 patients in the stroke module. In 2008, the coronary disease module was merged with the American College of Cardiology (ACC) Acute Coronary Treatment and Intervention Outcomes Network (ACTION®) registry to form the National Cardiovascular Data Registry (NCDR) ACTION Registry–GWTG, which has become the most comprehensive data source for acute coronary syndromes in the United States (3). In 2011, the GWTG outpatient program was expanded to become The Guideline Advantage™, in collaboration with the American Cancer Society and American Diabetes Association (2).

American College of Cardiology—National Cardiovascular Data Registry

This is a comprehensive outcomes-based quality improvement program operated by the ACC since 1997 (4). More than 2,200 hospitals participate in the NCDR across the United States. The NCDR includes the outpatient Practice INNovation And CLinical Excellence (PINNACLE) registry, with more than 1.5 million records, and various hospital-based registries, including ACTION Registry–GWTG, for patients with high-risk myocardial infarction; CathPCI, for cardiac catheterizations and percutaneous coronary intervention procedures; the ICD Registry, for tracking ...

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