Hostname: page-component-848d4c4894-hfldf Total loading time: 0 Render date: 2024-05-10T06:25:08.990Z Has data issue: false hasContentIssue false
  • English
  • Français

Empowering a database with national long-term data about mortality: the use of national death registries

Part of: The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD)

Published online by Cambridge University Press:  01 December 2008

David L.S. Morales ,
Andrew J. McClellan  and
Jeffrey P. Jacobs
David L.S. Morales*
Affiliation:
Division of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Baylor College of Medicine, Houston, Texas and Division of Congenital Heart Surgery, Texas Children’s Hospital, Houston, Texas, United States of America
Andrew J. McClellan
Affiliation:
Baylor College of Medicine, Houston, Texas, United States of America
Jeffrey P. Jacobs
Affiliation:
The Congenital Heart Institute of Florida (CHIF), Division of Thoracic and Cardiovascular Surgery, All Children’s Hospital and Children’s Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates (CSA), Saint Petersburg and Tampa, Florida, United States of America
*
Correspondence to: David L. S. Morales MD, Division of Congenital Heart Surgery, Texas Children’s Hospital, 6621 Fannin St, MC-WT 19345 H, Houston, TX 77030, United States of America. Tel: 832-826-1929; Fax: 832-825-1904; E-mail: dlmorale@texaschildrenshospital.org
Get access Rights & Permissions [Opens in a new window]

Abstract

The interest of professional medical societies in research about outcomes, mixed with the recent accessibility to management of data on the internet, has moved many societies to create national databases or registries for their specialty. In societies with procedure-based specialties such as surgery, these databases will help with the care of patients by predicting prognosis, defining risk-factors, and aiding with the selection of patients who are the best candidates for these procedures. These databases eventually will also help to establish standards of care. The latter is rapidly growing in importance as governments attempt to create “pay-for-performance” programs in many of the surgical specialties. It is essential to create a database from which a specialty can provide accurate data and standards to its members, its patients, and third parties, such as regulatory bodies and agencies of re-numeration. Unfortunately, surgeons often only care for their patients in the short-term peri-operative period, typically lasting weeks to months; and therefore, the ability of surgeons to create databases with long-term follow-up has been limited. The introduction of “personal health information” into a surgical database, with the intention of linking with other societies or national databases that have long-term follow-up, can remedy this weakness. This article describes the investigation by one surgical society into the available national registries of death and examines their accuracy, accessibility, cost, and their suitability in respect to the goals of that society. The information gathered, the comparisons outlined, and the processes used to determine the best combination of indices of death for this society should be translatable and hopefully useful for other societies and registries who wish to empower their databases with long-term national data about mortality.

Keywords

Congenital heart diseaseNational Death IndexDeath Master Filemortality
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue S2: Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease , December 2008 , pp. 188 - 195
Copyright
Copyright © Cambridge University Press 2008

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1.http://www.cdc.gov/nchs/ndi.htm, accessed September through November 2007.Google Scholar
2. Bilgrad R. Special Assistant to the Director, Division of Vital Statistics, National Center for Health Statistics, (Hyattsville, MD: August – October 2007), phone interviews.Google Scholar
3.http://www.ntis.gov/products/ssa-dmf.asp?loc=4-0-0, accessed September through November 2007.Google Scholar
4. Freedom of Information Act (FOIA, 5 U.S.C. 552(a)(3)).Google Scholar
5. Reshee M. Lead Social Security Insurance Analyst, Social Security Administration, Office of Research, Evaluation, and Statistics (Baltimore, MD: November 2007), phone interviews.Google Scholar
6.Schisterman, EF, Whitcomb, BW. Use of the Social Security Administration Death Master File for ascertainment of mortality status. Popul Health Metr 2004; 2: 2.CrossRefGoogle ScholarPubMed
7.Cowper, DC, Kubal, JD, Maynard, C, Hynes, DM. A primer and comparative review of major U.S. mortality databases. Ann Epidemiol 2002; 12: 462–468.CrossRefGoogle ScholarPubMed
8.Buchanich, JM, Dolan, DG, Marsh, GM, Madrigano, J. Underascertainment of deaths using Social Security Records: a recommended solution to a little-known problem. Am J Epidemiol 2005; 162: 193–194.CrossRefGoogle Scholar
9.http://www.ssa.gov/policy/about/epidemiology.html, accessed September through November 2007.Google Scholar
10.Lash, TL, Silliman, RA. A comparison of the National Death Index and Social Security Administration databases to ascertain vital status. Epidemiology 2001; 12: 259–261.CrossRefGoogle ScholarPubMed
11. Orr E. Product Manager, National Technical Information Service (Springfield, VA: December 2007), phone interviews.Google Scholar