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Epidemiology

An electronic health record cohort of Veterans with amyotrophic lateral sclerosis

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Pages 695-701 | Received 26 Apr 2023, Accepted 15 Jul 2023, Published online: 09 Aug 2023

References

  • Brown RH, Al-Chalabi A. Amyotrophic lateral sclerosis. N Engl J Med. 2017;377:162–72.
  • Bensimon G, Lacomblez L, Meininger V. A controlled trial of riluzole in amyotrophic lateral sclerosis. ALS/Riluzole study group. N Engl J Med. 1994;330:585–91.
  • Writing G, Edaravone A. Safety and efficacy of edaravone in well defined patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled trial. Lancet Neurol 2017;16:505–12.
  • Paganoni S, Macklin EA, Hendrix S, Berry JD, Elliott MA, Maiser S, et al. Trial of sodium phenylbutyrate-taurursodiol for amyotrophic lateral sclerosis. N Engl J Med. 2020;383:919–30.
  • Miller TM, Cudkowicz ME, Genge A, Shaw PJ, Sobue G, Bucelli RC, et al. Trial of antisense oligonucleotide tofersen for SOD1 ALS. N Engl J Med. 2022;387:1099–110.
  • Bedlack RS, Pastula DM, Welsh E, Pulley D, Cudkowicz ME. Scrutinizing enrollment in ALS clinical trials: room for improvement? Amyotroph Lateral Scler. 2008;9:257–65.
  • Granit V, Grignon A-L, Wuu J, Katz J, Walk D, Hussain S, et al. Harnessing the power of the electronic health record for ALS research and quality improvement: CReATe CAPTURE-ALS and the ALS Toolkit. Muscle Nerve. 2022;65:154–61.
  • Dalgıç ÖO, Wu H, Safa Erenay F, Sir MY, Özaltın OY, Crum BA, et al. Mapping of critical events in disease progression through binary classification: Application to amyotrophic lateral sclerosis. J Biomed Inform. 2021;123:103895.
  • Allen KD, Kasarskis EJ, Bedlack RS, Rozear MP, Morgenlander JC, Sabet A, et al. The National Registry of Veterans with amyotrophic lateral sclerosis. Neuroepidemiology. 2008;30:180–90.
  • VHA Directive 1101.07. Amyotrophic lateral sclerosis system of care. Washington, DC: Veterans Health Administration; 2021. Available at: https://www.va.gov/vhapublications/ViewPublication.asp?pub_ID=9423.
  • Taylor L, Zhou XH, Rise P. A tutorial in assessing disclosure risk in microdata. Stat Med. 2018;37:3693–706.
  • Sohn MW, Arnold N, Maynard C, Hynes DM. Accuracy and completeness of mortality data in the department of veterans affairs. Popul Health Metr. 2006;4:2.
  • Seabold S, Perktold J. Statsmodels: econometric and statistical modeling with python. Proceedings of the 9th Python in Science Conference. 2010; 92–6.
  • Institute of Medicine (U.S.). Committee on the review of the scientific literature on amyotrophic lateral sclerosis in veterans. Amyotrophic lateral sclerosis in veterans: review of the scientific literature. Washington, DC: National Academies Press; 2006.
  • Department of Veterans Affairs. Presumption of service connection for amyotrophic lateral sclerosis. Final rule. Fed Regist 2009;74:57072–4. https://www.ncbi.nlm.nih.gov/pubmed/20166277.
  • Segura T, Medrano IH, Collazo S, Maté C, Sguera C, Del Rio-Bermudez C, et al. Symptoms timeline and outcomes in amyotrophic lateral sclerosis using artificial intelligence. Sci Rep. 2023;13:702.
  • Karanevich AG, Weisbrod LJ, Jawdat O, Barohn RJ, Gajewski BJ, He J, et al. Using automated electronic medical record data extraction to model ALS survival and progression. BMC Neurol. 2018;18:205.
  • Meffert BN, Morabito DM, Sawicki DA, Hausman C, Southwick SM, Pietrzak RH, et al. US veterans who do and do not utilize veterans affairs health care services: demographic, military, medical, and psychosocial characteristics. Prim Care Companion CNS Disord. 2019;21:18m02350.
  • Active Duty Military Strength by Service Defense Manpower Data Center. 2019. Available at: https://dwp.dmdc.osd.mil/dwp/app/dod-data-reports/workforce-reports.
  • Lindquist LK, Love HC, Elbogen EB. Traumatic brain injury in Iraq and Afghanistan veterans: new results from a national random sample study. J Neuropsychiatry Clin Neurosci. 2017;29:254–9.
  • Beard JD, Engel LS, Richardson DB, Gammon MD, Baird C, Umbach DM, et al. Military service, deployments, and exposures in relation to amyotrophic lateral sclerosis etiology. Environ Int. 2016;91:104–15.
  • CDC. National ALS Disease Estimates. CDC.Gov. 2016. Available at: https://www.cdc.gov/als/National_disease_estimates.html.
  • Preston DL, Shimizu Y, Pierce DA, Suyama A, Mabuchi K. Studies of mortality of atomic bomb survivors. Report 13: Solid cancer and noncancer disease mortality: 1950–1997. Radiat Res. 2003;160:381–407.
  • Longinetti E, Fang F. Epidemiology of amyotrophic lateral sclerosis: an update of recent literature. Curr Opin Neurol. 2019;32:771–6.
  • Honeyford K, Expert P, Mendelsohn EE, Post B, Faisal AA, Glampson B, et al. Challenges and recommendations for high quality research using electronic health records. Front Digit Health. 2022;4:940330.
  • Bell SK, Delbanco T, Elmore JG, Fitzgerald PS, Fossa A, Harcourt K, et al. Frequency and types of patient-reported errors in electronic health record ambulatory care notes. JAMA Netw Open. 2020;3:e205867.
  • Vaughan Sarrazin M, Rosenthal GE, Turvey CL. Empirical-based typology of health care utilization by medicare eligible veterans. Health Serv Res. 2018;53:5181–200.
  • Miller RG, Anderson F, Brooks BR, Mitsumoto H, Bradley WG, Ringel SP, et al. Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database. Ann Neurol. 2009;65:S24–S8.
  • Weiskopf NG, Bakken S, Hripcsak G, Weng C. A data quality assessment guideline for electronic health record data reuse. EGEMS. 2017;5:14.
  • Weiskopf NG, Weng C. Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. J Am Med Inform Assoc. 2013;20:144–51.