Factors associated with survival in the National Registry of Veterans with ALS

Daniel M. Pastula, Cynthia J. Coffman, Kelli D. Allen, Eugene Z. Oddone, Edward J. Kasarskis, Jennifer H. Lindquist, Joel C. Morgenlander, Barbara B. Norman, Marvin P. Rozear, Laura A. Sams, Arman Sabet, Richard S. Bedlack

Research output: Contribution to journalArticlepeer-review

19 Scopus citations


The clinical course of patients with ALS is highly variable. While the median survival time from symptom onset is 24 years, there are reports of survival ranging from less than a year to more than 40 years. Such variability makes planning difficult for patients and physicians, and complicates clinical trial design. We sought to validate previous predictors of survival and search for new ones using a large group of ALS patients in the National Registry of Veterans with ALS. We were especially interested in how various aspects of military service might affect survival. Subjects were those in the National Registry of Veterans with ALS who had probable or definite ALS (according to El Escorial criteria). A multivariable Cox proportional hazard regression model was used to examine variables for statistical association with ventilator-free survival time (determined from date of first diagnosis). Subjects who had not died or started ventilation by 31 October 2006 were censored. Our group of 1085 US military veterans with ALS was primarily male (98%) and white (94%), with mostly sporadic (95%) and extremity-onset (76%) ALS. Symptom onset occurred at a mean age of 59.3 years (60.6 years for diagnosis). Median survival time from symptom onset was 4.7 years (3.3 years from diagnosis). In our multivariable model, older age at diagnosis (HR 1.41 (95% CI 1.271.55) per 10-year increase), non-extremity site of onset (HR 1.55 (1.241.94)), and past deployment to Vietnam (HR 1.73 (1.362.19)) were all associated with shortened survival. A longer time to diagnosis was associated with better survival (HR 0.77 (0.700.84) per one year increase in diagnosis time). In this unique cohort of veterans with ALS, traditional factors of reduced survival remained important. In addition, past deployment to Vietnam was found to be associated with shortened survival as well. This finding could be due to a common exposure, a shared characteristic, an unmeasured confounder, or an enrollment bias. More research will be needed to understand the reasons behind this new finding.

Original languageEnglish
Pages (from-to)332-338
Number of pages7
JournalAmyotrophic Lateral Sclerosis
Issue number5-6
StatePublished - 2009

Bibliographical note

Funding Information:
This study was supported by the Department of Veterans Affairs, Veterans Health Administration, Cooperative Studies Program (500A) and the Duke University Roadmap Clinical Research Training Program. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs or Duke University.

Funding Information:
for Pfizer and Lilly, a consultant for Metabolon, and has a research grant from UCB Pharma. D. Pastula, C. Coffman, K. Allen, E. Oddone, E. Kasarskis, J. Lindquist, J.Morgenlander, B. Norman, M. Rozear, L. Sams, and A. Sabet report no financial or other conflicts of interest.


  • ALS
  • Amyotrophic lateral sclerosis
  • Epidemiology
  • Military
  • Registry
  • Survival
  • Veteran(s)

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


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