National Cardiovascular Data Registry

National Cardiovascular Data Registry
Name	National Cardiovascular Data Registry
Formation	1997
Type	Registry
Headquarters	Washington, D.C.
Parent organization	American College of Cardiology

National Cardiovascular Data Registry

The National Cardiovascular Data Registry is a large US clinical registry collecting cardiovascular procedure and outcomes data to inform clinical practice guideline development, health policy decision-making, and quality measurement across hospitals, clinics, and academic centers such as Mayo Clinic, Cleveland Clinic, and Johns Hopkins Hospital. It interfaces with federal programs like Centers for Medicare and Medicaid Services initiatives, collaborates with professional societies including the American Heart Association and the Society for Cardiovascular Angiography and Interventions, and supports research used by investigators at institutions like Harvard Medical School, Stanford University, and University of Pennsylvania. The registry underpins performance improvement projects, comparative effectiveness research, and national benchmarking used by stakeholders such as the Joint Commission, Blue Cross Blue Shield Association, and state health departments.

Overview

The registry aggregates standardized clinical data on procedures such as percutaneous coronary intervention, device implantation, and cardiac surgery performed at centers including Massachusetts General Hospital, Mount Sinai Hospital (New York City), and UCLA Medical Center. Participating sites submit data elements aligned with definitions from entities like Food and Drug Administration and metrics used by National Quality Forum and Agency for Healthcare Research and Quality. Outputs include risk-adjusted outcome reports, registry-based randomized trials coordinated with centers like Duke University Hospital and data feeds used in collaboratives with organizations such as Institute for Healthcare Improvement and payers including UnitedHealthcare.

History and Development

The registry was initiated in the late 1990s through leadership at the American College of Cardiology with technical support from collaborators at Georgetown University, catalytic funding influenced by discussions involving stakeholders like Robert Wood Johnson Foundation, and methodologic input from epidemiologists at Johns Hopkins Bloomberg School of Public Health. Over time it expanded modules modeled after registries such as Society of Thoracic Surgeons and initiatives like Get With The Guidelines to cover additional domains including structural heart disease treated at centers such as Cedars-Sinai Medical Center and NewYork-Presbyterian Hospital. Milestones include integration with electronic health records used by vendors like Epic Systems and Cerner Corporation, and linkage projects with federal datasets from Centers for Disease Control and Prevention.

Registry Structure and Data Collection

The registry comprises multiple modules patterned after clinical programs at institutions including Brigham and Women's Hospital and UCSF Medical Center, each defined by standardized case report forms and taxonomy informed by committees with members from American College of Cardiology Foundation and academic partners including University of Michigan. Data elements cover demographics, comorbidities, procedural details, and outcomes, harmonized with coding systems like those maintained by Centers for Medicare and Medicaid Services and classification schemes used by World Health Organization collaborators. Input sources include catheterization labs at Toronto General Hospital, electrophysiology units at Mount Sinai Hospital (New York City), and cardiac surgery suites at Barnes-Jewish Hospital; data submission uses secure transfer mechanisms compatible with platforms from IBM and cloud services offered by Amazon Web Services for aggregation and analytics.

Quality Improvement and Research Impact

Registry outputs have informed guideline updates promulgated by organizations such as European Society of Cardiology and data-driven quality programs run by American Heart Association and the Society for Cardiovascular Angiography and Interventions. Findings from registry-based analyses have been published by researchers at Yale School of Medicine, Columbia University Irving Medical Center, and Vanderbilt University Medical Center and cited in policy discussions involving Office of the National Coordinator for Health Information Technology and insurers like Aetna. The registry has supported pragmatic clinical trials modeled after approaches used at Oxford University and multicenter comparative effectiveness studies analogous to work from NIH Clinical Center and led to practice changes adopted in hospitals such as Stanford Health Care.

Participation and Governance

Participation includes academic medical centers, community hospitals, and private practices represented by professional groups like American College of Cardiology chapters and state hospital associations including California Hospital Association. Governance involves clinical steering committees with experts from institutions like Yale School of Medicine and University of California, San Francisco, ethical oversight informed by boards similar to those at Massachusetts Institute of Technology and contractual relationships with data partners such as IBM Watson Health. Funding sources have included professional dues, fee-for-service reporting for quality programs, and collaborations with funders such as Robert Wood Johnson Foundation.

Data Privacy, Security, and Access

Data governance adheres to regulatory frameworks analogous to Health Insurance Portability and Accountability Act standards and uses de-identification methods endorsed by bioethics groups at Johns Hopkins Bloomberg School of Public Health and Georgetown University's Kennedy Institute of Ethics. Access policies provide tiered data use for investigators from institutions such as Harvard Medical School and University of Pennsylvania under data use agreements modeled on contracts used by National Institutes of Health repositories, with technical safeguards employing encryption standards from organizations like National Institute of Standards and Technology and managed access systems similar to those at ClinicalTrials.gov.

Limitations and Criticisms

Critiques mirror concerns raised in other registries such as those overseen by Society of Thoracic Surgeons and include sampling bias when participation skews toward large centers like Cleveland Clinic and Mayo Clinic, variable data completeness noted in studies by researchers at University of Michigan and Duke University, and potential conflicts of interest when registry activities intersect with industry partners like Medtronic and Boston Scientific. Additional debates involve representativeness compared to national surveillance by Centers for Disease Control and Prevention and methodological debates similar to those in literature from New England Journal of Medicine and JAMA about risk adjustment and causal inference.

Category:Cardiology