National Death Index

National Death Index
Name	National Death Index
Established	1979
Location	Hyattsville, Maryland
Administrator	National Center for Health Statistics
Parent	Centers for Disease Control and Prevention
Country	United States

Contents

National Death Index The National Death Index is a centralized mortality database maintained by the National Center for Health Statistics within the Centers for Disease Control and Prevention. It serves as a linkage resource for epidemiologists, biostatisticians, clinicians, and policy analysts seeking death ascertainment for cohorts assembled in settings such as the Framingham Heart Study, Nurses' Health Study, Veterans Health Administration cohorts, and clinical trials funded by the National Institutes of Health. The index enables mortality follow-up for investigators affiliated with academic institutions, federal agencies, and private organizations including Harvard University, Johns Hopkins University, Mayo Clinic, Kaiser Permanente, and the Department of Veterans Affairs.

Overview

The index compiles death record information from state vital registration offices across the United States, aggregating data fields used in linkage with study databases from institutions like Columbia University, University of California, San Francisco, Stanford University, Duke University, and University of Michigan. Typical users include researchers associated with the National Cancer Institute, Agency for Healthcare Research and Quality, Food and Drug Administration, and non-profits such as the American Heart Association and American Cancer Society. The database supports longitudinal outcome ascertainment in projects similar to those at the Framingham Heart Study, Multi-Ethnic Study of Atherosclerosis, and Women's Health Initiative.

Initiated in 1979, the system was developed in response to needs voiced by investigators at institutions like Centers for Disease Control and Prevention collaborators and academic epidemiologists from Yale University and University of North Carolina at Chapel Hill. Early collaborators included state health departments such as the California Department of Public Health and New York State Department of Health, and federal partners including the Social Security Administration for vital record matching. Over time, the program integrated classifications from the World Health Organization's International Classification of Diseases updates and adapted to electronic data interchange standards influenced by initiatives at the Office of Management and Budget and Department of Health and Human Services.

Operational responsibility lies with the National Center for Health Statistics unit within the Centers for Disease Control and Prevention, which coordinates with state vital records offices such as Texas Department of State Health Services and Florida Department of Health. Data submission and linkage procedures reflect interfaces similar to those used in surveillance systems like the Behavioral Risk Factor Surveillance System and registries such as the Surveillance, Epidemiology, and End Results Program. Technical liaisons have historically worked with vendors and contractors in the health informatics space associated with IBM, Oracle Corporation, and academic computing centers at Massachusetts Institute of Technology and Carnegie Mellon University.

Records include standardized fields such as name, date of birth, date of death, place of death, and cause-of-death coded according to International Classification of Diseases revisions promulgated by the World Health Organization. Cause coding reflects manuals used by medical examiners and agencies like the National Association of Medical Examiners and coroners in jurisdictions such as Los Angeles County and Cook County. Data elements align with reporting frameworks used by the National Vital Statistics System and complement datasets like the National Health Interview Survey, Medicare, and Medicaid claims for linkage studies.

Access policies require institutional affiliation and compliance with data-use agreements executed between requestors from entities such as Harvard School of Public Health, University of Pennsylvania, Columbia University Medical Center, or federal agencies like the Department of Defense. Researchers must follow procedures similar to those required by the Institutional Review Board at their institutions and may coordinate with program officers at the National Institutes of Health or the Agency for Healthcare Research and Quality. Fee structures have been set by the administering agency and are comparable to costs charged for linkage services provided by state vital records offices and research data centers like the National Center for Health Statistics Research Data Center.

The index has been used in cardiovascular outcome studies by investigators at Brigham and Women's Hospital, cancer epidemiology by Memorial Sloan Kettering Cancer Center researchers, pharmacoepidemiology by teams at Food and Drug Administration-funded centers, and veteran outcomes research within the Department of Veterans Affairs. It supports mortality ascertainment in multi-center trials like those sponsored by the National Heart, Lung, and Blood Institute and cohort studies such as the Black Women's Health Study, enabling linkage with administrative datasets like Social Security Administration death records, Medicare enrollment files, and state cancer registries including the California Cancer Registry and New York State Cancer Registry.

Use of the dataset implicates privacy protections enforced by statutes and policies associated with the Department of Health and Human Services and requires adherence to guidance from institutional bodies such as the Office for Human Research Protections and Health Resources and Services Administration. Legal frameworks relevant to data sharing include provisions influenced by federal entities such as the Office of Management and Budget and compliance obligations similar to those overseen by the Federal Trade Commission for data security practices. Ethical oversight commonly involves review by Institutional Review Boards and data governance arrangements with state vital records offices like the New Jersey Department of Health and Georgia Department of Public Health.

Category:Vital statistics