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May 24

Could the Recent Change in Availability of Death Master File Data Affect Your Research?

Cancer epidemiologists and other health researchers have long relied on the Social Security Administration’s (SSA) Death Master File (DMF) data for determining the vital status of participants.  Researchers find the DMF helpful in their observational studies and prevention and clinical trials because it is a single, centralized source of information across the 50 states, low cost, quite current, frequently updated, and fairly complete. 

The DMF covers all deaths reported to the SSA from a variety of sources, including state death records, death reports from family members, funeral homes, hospitals, states, Federal agencies, postal authorities, and financial institutions. 

Many cancer epidemiologists use the DMF as part of their routine procedures for following up cohort study participants for vital status.  For example, the NIH-AARP cohort of older Americans, which has more than half a million study participants across the United States, relies on linkages with the DMF and other sources to provide information about who in the cohort has died.  Trialists involved in cancer screening in the Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial have used the DMF to help monitor adverse events that result in death and to gather information on deaths from malignancies.

Recently, SSA officials determined that Section 205r of the Social Security Act does not allow them to continue to disclose state death records that SSA receives through its contracts with the states, except in very limited circumstances.  A fact sheet about this important change is available online. 

What Does This Mean for Researchers?

Until November 1, 2011, information from state death records was included in the Public Death Master File.  The DMF is still available through the National Technical Information System and other sources, but there is one big difference from before November 1, 2011.  If the SSA knows of a death only from the states and not from any of its other sources of death information (which happens roughly more than one-third of the time), then those death data will not appear on the DMF.

While the DMF can be useful to researchers for deaths recorded in the file from some source other than through SSA’s contracts with states, the absence of a record for a person on the DMF still could mean that the person has not died. 

Fortunately, the National Death Index (NDI) still is available to researchers from the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC).  NCHS has the legislative authority and is mandated under the Public Health Service Act to collect vital statistics annually and is unaffected by the Social Security Act provisions.

The NDI is a centralized source of information for data on all deaths recorded in the 50 states. Researchers can link their data to the NDI, which is made available solely for medical and health research to ascertain vital status.  Death records are added to the NDI file annually, approximately 12 months after the end of a particular calendar year.  

Map of Maryland's Age-Adjusted Death Rates by County, 2004-2008
State Cancer Profiles Map of Age-Adjusted Death Rates for Maryland (Click map to enlarge.)

Researchers in the extramural community, investigators at NCI and other NIH Institutes and Centers, and many other Federal health agencies have long used the DMF resource.  NCI’s Surveillance, Epidemiology and End Results (SEER) Program is one example.  SEER is a key resource for cancer statistics in the United States.  Individual cancer registries that are part of SEER use information from the DMF to search for missing social security numbers, check data (names, date of birth), and remove duplicate records from  their cancer registry files, an important activity to ensure the completeness and quality of the SEER data.

Contact Us

Many individuals understand the impact of this SSA change and the importance and value of collecting death information from a single source that is timely and complete.  NIH staff are working together with NCHS staff on a plan to accelerate the availability of the NDI and expedite the application process.  NCI’s Division of Cancer Control and Population Sciences (DCCPS) is interested in hearing from researchers. How have you used the DMF in your research?

For questions about the DMF issues, contact Debbie Winn in NCI’s Division of Cancer Control and Population Sciences at winnde@mail.nih.gov.  We look forward to hearing from you. 

 

Photo of Deborah WinnDeborah Winn, Ph.D., is the Deputy Director of NCI’s Division of Cancer Control and Population Sciences. Dr. Winn plays a central role in the planning, priority setting, development, and management of the Division’s large integrated programs in cancer surveillance, epidemiology, behavioral science, health services, dissemination and diffusion, and cancer survivorship research. She is internationally recognized for her epidemiologic research on tobacco and head and neck cancer. Her other research interests include environmental influences on breast cancer and evaluating the impact of epidemiologic research.

 
Dr. Winn received an M.S.P.H. and her Ph.D. in epidemiology from the School of Public Health at the University of North Carolina at Chapel Hill. She also received a B.A. in government from Radcliffe College. She is a Fellow of the American College of Epidemiology and a member of the Delta Omega Public Health Honor Society. She has received numerous awards in recognition of her research and professional service, including from NIH and the U.S. Department of Health and Human Services (HHS), and the H.A. Tyroler Distinguished Epidemiologist Alumni Award from the University of North Carolina at Chapel Hill.

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