We used direct confirmation of death from these three sources as the criterion reference. All 30 patients deemed dead by the SSDI had confirmatory death certificates. There were a variety of causes of death in the selected cohort as illustrated in the Figure. For the patients with direct follow-up 20 were determined to be dead and 88 alive. Of the 12 patients not able to be contacted through direct follow-up, the SSDI indicated that 10 were dead and two alive. In this study we found that the readily available online SSDI was an accurate and facile database to determine death outcomes.
It showed excellent sensitivity and specificity for those for whom we could complete direct follow-up, as well as information on patients who we could not contact, including 10 with confirmatory death certificates primary endpoint, The database is available online and does not require cost or special expertise.
However, its use does require institutional review board permission since protected health information PHI elements are used to search. However, it takes a formal submission with a two-month response time and has associated costs. A recent study showed the two databases to have comparable accuracy. However, these studies compared databases and did not use direct follow-up as the criterion reference.
Death Records: Online Searchable Death Indexes & Databases
There were a variety of causes This can be done by name and other demographics. Studies not using the SSN in their searches found poorer sensitivity compared to when it was used, and investigators should beware of searches not using the SSN.
For our syncope cohort, this was a secondary analysis carried out up to two years after the index ED visit. Hence, we were not able to determine how current the online SSDI is, nor verify the governmental claim that it is completed within six months of a death. Several online database ancestry and genealogy websites incorporate the SSDI search engine, so researchers should take care to use only the native search site.
We did not evaluate the engine at these secondary sites and cannot comment on their accuracy. Although our syncope study recorded accurate SSNs, this may not be the case for other ED-based studies, with a high proportion of undocumented subjects or frequent recording errors in demographic information. Searching the online SSDI, with a correct SSN provides an accurate method to determine death as an outcome in clinical research studies.
A majority of subjects ordinarily lost to follow-up can have their vital status determined. Reprints available through open access at www. National Center for Biotechnology Information , U. West J Emerg Med. Author information Article notes Copyright and License information Disclaimer.
Received May 29; Accepted Sep This article has been cited by other articles in PMC. Methods We selected 30 patients who were determined to be dead and 90 patients thought to be alive after an ED visit as determined by a web-based searched of the SSDI. Conclusions SSDI is an accurate measure of death outcomes and appears to have the advantage of finding deaths among patients lost to follow-up.
Open in a separate window. In November , due to privacy and identity theft concerns, the Social Security Administration redacted and no longer included death data derived from State sources. On December 18, , Ancestry.
Some of their originally free information is now available via paid subscription only. In March , the entire Death Master File , edition of November 30, , was made available for download. Updates are also available by a subscription service.
However, prices for both the full file and the updates are in the business-only range, not what most hobbyists such as amateur genealogists would be willing to pay. A review by the Government Accountability Office in found that the Social Security Administration and other federal benefit-paying agencies that use data from the Death Master File are potentially vulnerable to making improper payments due to errors or processes that could lead to errors.
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Retrieved National Technical Information Service. Retrieved 25 January Archived from the original on Clamps Down on Death Record Access". NY Times.