Disease Registries

Disease Registries

Over the past decade, clinical registries have become potent contributors to scientific knowledge by offering a glimpse into real-world trends and patterns of care.

Hospital personnel, payers, government, and the scientific community increasingly are recognizing the value of these clinical databases.

Findings from registries have been included in clinical practice guidelines, as well as in statistical publications such as the American Heart Association’s Heart and Stroke Statistical Update. Hospital administrators, clinicians, and quality-improvement personnel view registries as valuable mechanisms to assess the quality of care provided to patients.

The DCRI optimizes the operational efficiency of clinical registries, as well as expanding their application for maximal clinical and policy impact. We are nationally recognized as experts in the data management and statistical analysis of large clinical registry datasets.

Registries serve as a tool to improve quality of care:

  • Are we doing the right things? (evidence)
  • Are we doing the right things right? (implementation)
  • Are our patients better off for it? (outcomes)
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Signature Registries with Professional Societies

American College of Cardiology (ACC) National Cardiovascular Data Registry (NCDR)

  • Over the past 10 years, the DCRI has supported the ACC as a statistical analytic center for their national registries.  In particular, DCRI serves as the analytic coordinating center for the ACTION Registry-GWTG, which is the nation’s largest quality improvement registry for acute myocardial infarction (AMI).  The DCRI is also the main analytic partner for the ACC’s largest and longest-running database, the CathPCI Registry, which includes national data on diagnostic cardiac catheterizations and percutaneous coronary interventions (PCIs) for more than 2.5 million patients.  In collaboration with the leadership, coordinating capacity, and analytic strengths of the DCRI, the ACC has recently been awarded several federal stimulus grants to expand their registries’ capability for longitudinal data collection, as well as to evolve them into an infrastructure that promotes and facilitates CV clinical trials.  Together, the ACC NCDR ACTION Registry and CathPCI Registry have successfully published more than 80 articles in peer-reviewed journals. This study is ongoing.

Society of Thoracic Surgeons (STS) National Cardiac Surgery Database

  • The DCRI is currently in its 11th year as the data coordinating center for the STS National Cardiac Surgery Database.  This professional society database receives clinical data on coronary bypass surgery, thoracic surgery, and congenital heart surgery from over 900 hospitals in the United States, and currently holds more than 3.5 million procedure records.  The DCRI is responsible for all site contacts, electronic data harvests, and data management; we develop state-of-the-art risk models and analyze all research queries for this database, providing quality feedback reports to sites via a DCRI-run web-based portal.  In August 2000, the STS and DCRI were awarded funding from the Food and Drug Administration (FDA) to capture and analyze transmyocardial revascularization (TMR) procedures and outcomes in the STS database, facilitating a better understanding of trends in device use, leading to important clinical findings promoting safer use of the technology, and prompting a Centers for Medicare & Medicaid (CMS) review of the technology.  To date, the STS National Database has successfully published more than 110 peer-reviewed papers. This study is ongoing.

American Heart Association and American Stroke Association's Get With The Guidelines Program*

  • The GWTG Program is a joint initiative of the American Heart Association and the American Stroke Association. GWTG is a hospital-based quality improvement initiative designed to improve the care--as well as reduce the death and disability--of patients with cardiac disease and stroke. Since its founding in 2003, the GWTG program has further subcategorized itself into disease-specific registries, two of which being GWTG-Stroke and GWTG-Heart Failure (HF). Since 2003, GWTG researchers have collectively produced more than 156 publications. Since 2005, the DCRI has served as the statistical analysis center for GWTG-Stroke and -HF registries.

*In 2008, the American College of Cardiology’s (ACC’s) Acute Coronary Treatment and Intervention Outcomes Network (ACTION) Registry joined the American Heart Association’s (AHA’s) Get With The Guidelines (GWTG) - CAD program to form the nation’s largest, most comprehensive cardiovascular patient database entitled, “ACTION Registry-GWTG.

Industry-Sponsored Registries

  • The Idiopathic Pulmonary Fibrosis Outcomes Registry (IPF-PRO)
  • Affordability and Real-world Antiplatelet Treatment Effectiveness after Myocardial Infarction Study (ARTEMIS)
  • Treatment with ADP Receptor Inhibitors: Longitudinal Assessment of Treatment Patterns and Events after Acute Coronary Syndrome (TRANSLATE-ACS)
  • Outcomes Registry for Better Informed Treatment of Atrial Fibrillation (ORBIT-AF and ORBIT-AF II)
  • Can Rapid Risk Stratification of Unstable Angina Patients Suppress ADverse Outcomes with Early Implementation of the ACC/AHA Guidelines (CRUSADE)

Other Notable Registries

  • Childhood Arthritis & Rheumatology Research Alliance (CARRA)
  • Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH)
  • The Pulmonary Fibrosis Foundation Patient (PFF) Registry (PFF Registry)
  • Sudden Cardiac Death in Heart Failure Trial (SCD-HEFT EQOL Year 10)
  • Surgical Treatment for Ischemic Heart Failure (STICH)
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A hallmark of our work is ongoing innovation across all of our operations, including:

  • Data management and quality control
  • State-of-the-art statistical methodologies
  • Pioneering performance feedback
  • Quality improvement strategies