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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 24, 2023 - Issue 3-4
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Epidemiology

A revision to the United States national ALS registry’s algorithm to improve Case-Ascertainment

Paul Mehta1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USACorrespondence[email protected]
View further author information
,
Jaime Raymond1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USAView further author information
,
Moon Han1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USAView further author information
,
Reshma Punjani1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USAView further author information
,
Theodore Larson1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USAView further author information
,
James D. Berry2 Sean M Healey & AMG Center for ALS, Massachusetts General Hospital, Boston, MA, USAView further author information
,
Benjamin Rix Brooks3 Carolinas Medical Center, Atrium Health, University of North Carolina School of Medicine – Charlotte Campus, Charlotte, NC, USAORCID Iconhttps://orcid.org/0000-0002-1914-5061View further author information
ORCID Icon,
Björn Oskarsson4 Department of Neurology, Mayo Clinic, Jacksonville, FL, USA andORCID Iconhttps://orcid.org/0000-0002-1725-9866View further author information
ORCID Icon,
Stephen a. Goutman5 Department of Neurology, University of Michigan, Ann Arbor, MI, USAView further author information
&
Kevin Horton1 Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USAView further author information
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Pages 230-236 | Received 28 Jun 2022, Accepted 29 Aug 2022, Published online: 04 Oct 2022

References

  • Mitsumoto H. Amyotrophic Lateral Sclerosis. Philadelphia, PA: FA Davis Company; 1998. 480 p.
  • Bello-Haas VD. Physical therapy for individuals with amyotrophic lateral sclerosis: current insights. Degener Neurol Neuromuscul Dis. 2018;8:45–54.
  • Rooney J, Byrne S, Heverin M, Corr B, Elamin M, Staines A, et al. Survival analysis of Irish amyotrophic lateral sclerosis patients diagnosed from 1995-2010. PLoS One. 2013;8:e74733.
  • Sorenson EJ, Stalker AP, Kurland LT, Windebank AJ. Amyotrophic lateral sclerosis in Olmsted County, Minnesota, 1925 to 1998. Neurology. 2002;59:280–2.
  • Goutman SA, Boss J, Patterson A, Mukherjee B, Batterman S, Feldman EL. High plasma concentrations of organic pollutants negatively impact survival in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2019;90:907–12.
  • Mehta P, Raymond J, Punjani R, Han M, Larson T, Kaye W, et al. Prevalence of amyotrophic lateral sclerosis in the United States using established and novel methodologies, 2017. Amyotroph Lateral Scler Frontotemporal Degener. 2022;0:1–9.
  • Bhandari R, Kuhad A, Kuhad A. Edaravone: a new hope for deadly amyotrophic lateral sclerosis. Drugs Today. 2018;54:349–60.
  • Dharmadasa T, Kiernan MC. Riluzole, disease stage and survival in ALS. Lancet Neurol. 2018;17:385–6.
  • Larson TC, Kaye W, Mehta P, Horton DK. Amyotrophic lateral sclerosis mortality in the United States, 2011-2014. Neuroepidemiology. 2018;51:96–103.
  • Mehta P, Antao V, Kaye W, Sanchez M, Williamson D, Bryan L, Centers for Disease Control and Prevention (CDC), et al. Prevalence of amyotrophic lateral sclerosis - United States. MMWR Suppl. 2014;63:1–14. 1–14.
  • Mehta P, Kaye W, Bryan L, Larson T, Copeland T, Wu J, et al. Prevalence of amyotrophic lateral sclerosis - United States, 2012-2013. MMWR Surveill Summ. 2016;65:1–12.
  • Mehta P, Kaye W, Raymond J, Punjani R, Larson T, Cohen J, et al. Prevalence of amyotrophic lateral sclerosis - United States, 2015. MMWR Morb Mortal Wkly Rep. 2018;67:1285–9.
  • Mehta P, Kaye W, Raymond J, Wu R, Larson T, Punjani R, et al. Prevalence of amyotrophic lateral sclerosis - United States, 2014. MMWR Morb Mortal Wkly Rep. 2018;67:216–8.
  • Mehta P, Raymond J, Punjani R, Larson T, Bove F, Kaye W, et al. Prevalence of amyotrophic lateral sclerosis (ALS), United States, 2016. Amyotroph Lateral Scler Frontotemporal Degener. 2022;3-4:220–225.
  • Mehta P, Raymond J, Punjani R, Han M, Larson T, Kaye W, et al. Incidence of amyotrophic lateral sclerosis in the United States, 2014-2016. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23(5-6):378–82.
  • US Congress. S.578 - ALS disability insurance access act of 2019. Washington, DC: 116th Congress. 2019.
  • Kaye WE, Sanchez M, Wu J. Feasibility of creating a National ALS Registry using administrative data in the United States. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:433–9.
  • Centers for Disease Control and Prevention. National death index. [updated 2022 Jan 10; cited 2022 Jun 1]. Available at: https://www.cdc.gov/nchs/ndi/index.htm.
  • Nelson LM, Topol B, Kaye W, Raymond J, Horton DK, Mehta P, et al. Evaluation of the Completeness of ALS Case Ascertainment in the U.S. National ALS Registry: application of the capture-recapture method. Neuroepidemiology. 2022;56:104–14.
  • Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • Centers for Medicare & Medicaid Services. Medicare part D prescribers - by geography and drug. [updated 2022 Jul 27; cited 2022 Jul 28]. Available at https://data.cms.gov/provider-summary-by-type-of-service/medicare-part-d-prescribers/medicare-part-d-prescribers-by-geography-and-drug.

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