Papers

National ALS Registry Journal Publications - CDC/ATSDR

The ATSDR is committed for persons with ALS, caregivers, and researchers to read the latest scientific publications from the National ALS Registry and its partners. Many of the articles below are considered “Open Access” or available to read without a fee or subscription.

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Mehta P, Raymond J, Han M, Larson T, Berry J, Paganoni S, Mitsumoto H, Bedlack R, Horton D. Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry’s Research Notification Mechanism. J Med Internet Res 2021;23(12):e28021. DOI: 10.2196/28021external icon

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Andrew A, Zhou J, Gui J, Harrison A, Shi X, Li M, Guetti B, Nathan R, Tischbein M, Pioro EP, Stommel E, Bradley W. Pesticides applied to crops and amyotrophic lateral sclerosis risk in the U.S. Neurotoxicology. 2021 Sep 22;87:128-135. doi: 10.1016/j.neuro.2021.09.004external icon

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Mehta P, Raymond J, Punjani R, Larson T, Bove F, Kaye W, Nelson LM, Topol B, Han M, Muravov O, Genson C, Davis B, Hicks T, Horton K. Prevalence of amyotrophic lateral sclerosis (ALS), United States, 2016. Amyotroph Lateral Scler Frontotemporal Degener. 2021 Aug 23:1-6. DOI: 10.1080/21678421.2021.1949021external icon

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Bledsoe MJ, Rechtman L, Wagner L, Mehta P, Horton DK, Kaye WE. Analysis of Biospecimen Demand and Utilization of Samples from the National Amyotrophic Lateral Sclerosis Biorepository. Biopreserv Biobank. 2021 Jul 14. DOI: 10.1089/bio.2021.0039external icon

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Raymond J, Mehta P, Larson T, Pioro EP, Horton DK. Reproductive History and Age of Onset for Women Diagnosed with Amyotrophic Lateral Sclerosis: Data from the National ALS Registry: 2010-2018. Neuroepidemiology. 2021 Jul 2:1-9. DOI: 10.1159/000516344external icon

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Hiroshi Mitsumoto, Diana C. Garofalo, Madison Gilmore, Leslie Andrews, Regina M. Santella, Howard Andrews, Martin McElhiney, Jennifer Murphy, Jeri W. Nieves, Judith Rabkin, Jonathan Hupf, D. Kevin Horton, Paul Mehta & Pam Factor-Litvak (2021) Case-control study in ALS using the National ALS Registry: lead and agricultural chemicals are potential risk factors, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI:10.1080/21678421.2021.1936556external icon

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Andrew AS, Pioro EP, Li M, Shi X, Gui J, Stommel EW, Butt TH, Peipert D, Henegan P, Tischbein M, Cazzolli P, Novak J, Quick A, Pugar KD, Sawlani K, Katirji B, Hayes TA, Horton DK, Mehta P, Bradley WG. The Incidence of Amyotrophic Lateral Sclerosis in Ohio 2016-2018: The Ohio Population-Based ALS Registry. Neuroepidemiology. 2021 Apr 26:1-10
DOI:10.1159/000515103external icon

Jaime Raymond, Paul Mehta, Ted Larson, Pam Factor-Litvak, Bryn Davis & Kevin Horton (2021) History of vigorous leisure-time physical activity and early onset amyotrophic lateral sclerosis (ALS), data from the national ALS registry: 2010–2018, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2021.1910308 external icon

Todd M. Bear, Angela M. Malek, Abigail Foulds, Judith Rager, Sarah E. Deperrior, John E. Vena, Theodore C. Larson, Paul Mehta, D. Kevin Horton & Evelyn O. Talbott (2021) Recruitment of population-based controls for ALS cases from the National ALS Registry, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2021.1887262external icon

Van Tress, Jeremy Jon, “Amyotrophic Lateral Sclerosis Patients’ Sociological Resilience, Self-Determination, and Decision-Making for Life-Sustaining Treatments” (2020). Walden Dissertations and Doctoral Studies. 9509. https://scholarworks.waldenu.edu/dissertations/9509external icon

Andrew, A.S., Bradley, W.G., Peipert, D., Butt, T., Amoako, K., Pioro, E.P., Tandan, R., Novak, J., Quick, A., Pugar, K.D., Sawlani, K., Katirji, B., Hayes, T.A., Cazzolli, P., Gui, J., Mehta, P., Horton, D.K. and Stommel, E.W. (2020), Risk factors for amyotrophic lateral sclerosis: a regional U.S. case‐control study. Muscle & Nerve. Accepted Author Manuscript. DOI: 10.1002/mus.27085 external icon

Goutman SA, Boss J, Guo K, et al. Untargeted metabolomics yields insight into ALS disease mechanisms. Journal of Neurology, Neurosurgery & Psychiatry Published Online First: 14 September 2020. DOI: 10.1136/jnnp-2020-323611external icon

Figueroa‐Romero, C., Mikhail, K.A., Gennings, C., Curtin, P., Bello, G.A., Botero, T.M., Goutman, S.A., Feldman, E.L., Arora, M. and Austin, C. (2020), Early life metal dysregulation in amyotrophic lateral sclerosis. Ann Clin Transl Neurol, 7: 872-882. DOI: 10.1002/acn3.51006 external icon

Collins TR. 2020. Neurologists Call for ALS Registry to Research Environmental Toxins Associated with Disease. Neurology Todayexternal icon

Goutman SA, Feldman EL. Voicing the Need for Amyotrophic Lateral Sclerosis Environmental Research. JAMA Neurol. Published online March 02, 2020. DOI: 10.1080/21678421.2020.1753777external icon

Angeline S. Andrew, Katie M. O’Brien, Brian P. Jackson, Dale P. Sandler, Wendy E. Kaye, Laurie Wagner, Elijah W. Stommel, D. Kevin Horton, Paul Mehta & Clarice R.Weinberg (2020): Keratinous biomarker of mercury exposure associated with amyotrophic lateral sclerosis risk in a nationwide U.S. study, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, doi:10.1001/jamaneurol.2020.0051external icon

- - Punjani R, Wagner L, Horton K, Kaye W. Atlanta metropolitan area amyotrophic lateral sclerosis (ALS) surveillance: incidence and prevalence 2009 – 2011 and survival characteristics through 2015. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration https://doi.org/10.1080/21678421.2019.1682614external icon
- - Comparison of the clinical and genetic features of amyotrophic lateral sclerosis across Cuban, Uruguayan and Irish clinic-based populations https://jnnp.bmj.com/content/90/6/659.fullexternal icon or https://jnnp.bmj.com/content/jnnp/90/6/659.full.pdfpdf iconexternal icon
- - Bandres-Ciga S, Noyce A, Hemani G, Nicolas A, Calvo A, Mora G, The International ALS Genomics Consortium, Tienari P, Stone D, Nalls M, Singleton A, Chiò A, & Traynor B. Shared polygenic risk and causal inferences in amyotrophic lateral sclerosis. Annals of Neurology. DOI:10.1002/ana.25431
- - Shi X, Li M, Hunter O, Guetti B, Andrew A, Stommel E, Bradley W, & Karagas M. Estimation of environmental exposure: interpolation, kernel density estimation or snapshotting. Annals of GIS. DOI: https://doi.org/10.1080/19475683.2018.1555188external icon
- - Ryan M, Vailant T, McLaughlin R, Dohery M, Ronney J, Haverin M, Gutierrez J, Lara-Fernandez G, Rodriguez M, Hackembruch J, Perna A, Vazquez M, Musio M, Ketzoian C, Logroscine G, & Hardiman O. Comparison of the clinical and genetic features of amyotrophic lateral sclerosis across Cuban, Uruguayan, and Irish clinic-based populations. Journal of Neurology, Neurosurgery, and Psychiatry. DOI: http://dx.doi.org/10.1136/jnnp-2018-319838external icon
- - Andrew A, Chen C, Caller T, Tandan R, Henegan P, Jackson B, Hall B, Bradley W, & Stommel E. Toenail mercury levels are associated with amyotrophic lateral sclerosis (ALS) risk. Muscle & Nerve. DOI: https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.26055external icon
  - Bradley W, Andrew A, Traynor B, Chio A, Butt T, & Stommel E. Gene-Environment-Time Interactions in Neurodegenerative Diseases: Hypotheses and Research Approaches. Annals of Neurosciences. DOI: 10.1159/000495321
  - Jaime Raymond, BjÖrn Oskarsson, Paul Mehta & Kevin Horton (2019) Clinical characteristics of a large cohort of US participants enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010–2015, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: http://www.tandfonline.com/doi/full/10.1080/21678421.2019.1612435external icon
- - Bhattacharya R, Harvey RA, Abraham K, Rosen J & Mehta P (2019): Amyotrophic lateral sclerosis among patients with a Medicare Advantage prescription drug plan; prevalence, survival and patient characteristics, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: https://doi.org/10.1080/21678421.2019.1582674external icon
- - Goutman SA, Boss J, Patterson A, et al High plasma concentrations of organic pollutants negatively impact survival in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry Published Online First: 13 February 2019. doi: 10.1136/jnnp-2018-319785 https://jnnp.bmj.com/content/early/2019/02/13/jnnp-2018-319785.full external icon

- - Kullmann JAP and Pamphlett R. A Comparison of Mercury Exposure from Seafood Consumption and Dental Amalgam Fillings in People with and without Amyotrophic Lateral Sclerosis (ALS): An International Online Case-Control Study. International Journal of Environmental Research and Public Health 2018, http://dx.doi.org/10.3390/ijerph15122874external icon
- - Mehta P, Kaye W, Raymond J, et al. Prevalence of Amyotrophic Lateral Sclerosis — United States, 2015. MMWR Morb Mortal Wkly Rep 2018;67:1285–1289. DOI: http://dx.doi.org/10.15585/mmwr.mm6746a1external icon
- - Rechtman L, Jordan H, Kaye W, Ritsick M, & Mehta P. (2018). Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign. Journal of Patient Experience. https://doi.org/10.1177/2374373518811935external icon
- - Kullmann, J, A, P, Hayes, S, Pamphlett, R. Are people with amyotrophic lateral sclerosis (ALS) particularly nice? An international online case-control study of the Big Five personality factors. Brain and Behavior 2018, September 21: https://doi.org/10.1002/brb3.1119external icon
- - Kullmann, J, A, P, Hayes, S, Pamphlett, R. Is psychological stress a predisposing factor for amyotrophic lateral sclerosis (ALS)? An online international case-control study of premorbid life events, occupational stress, resilience and anxiety. PLOS One 2018, September 21: https://doi.org/10.1371/journal.pone.0204424 external icon
- - Nelson L, M, Topol B, Kaye W, Williamson D, Horton D, K, Mehta P, Wagner T, Estimation of the Prevalence of Amyotrophic Lateral Sclerosis external icon in the United States Using National Administrative Healthcare Data from 2002 to 2004 and Capture-Recapture Methodology. Neuroepidemiology 2018;51:173-181.
- - Larson T, C, Kaye W, Mehta P, Horton D, K, Amyotrophic Lateral Sclerosis Mortality in the United States, 2011–2014external icon. Neuroepidemiology 2018;:96-103.
- - Harrison D, Mehta P, van Es M, Stommel E, Drory V, Nefussy B, van den Berg L, Crayle J, & Bedlack R. “ALS reversals”: demographics, disease characteristics, treatments, and co-morbiditiesexternal icon. Amyotroph Lateral Scler Frontotemporal Degener; 2018; DOI: 10.1080/21678421.2018.1457059.
- - Mehta P, Kaye W, Raymond J, et al. Prevalence of Amyotrophic Lateral Sclerosis — United States, 2014. MMWR Morb Mortal Wkly Rep 2018;67:216–218. DOI external icon.
- - Huang Z, Zhang H, Boss J, Goutman SA, Mukherjee B, Dinov ID, et al. (2017) Complete hazard ranking to analyze right-censored data: An ALS survival study external icon. PLoS Comput Biol 13(12): e1005887.

- - Kuczmarski T, Stommel EW, Riley K, Tandan R, Chaudhry V, Clawson L, Caller TA, Henegan PL, Facciponte DN, Bradley WG, Andrew AS. Medical history of chemotherapy or immunosuppressive drug treatment reduces risk of amyotrophic lateral sclerosis (ALS). J Neurol, 2017; 264: 1763-1767. doi 10.1007/s00415-017-8564-2.
- - Andrew AS, Caller TA, Tandan R, Duell EJ, Henegan PL, Field NC, Bradley WG, Stommel EW. Environmental and Occupational Exposures and Amyotrophic Lateral Sclerosis in New England. Neurodegener Dis. 2017; 17(2-3):110-6. PMCID: PMC5383428
- - Wagner KN, Nagaraja HN, Allain DC, Quick A, Kolb SJ, Roggenbuck J. Patients with sporadic and familial amyotrophic lateral sclerosis found value in genetic testing. external icon Mol Genet Genomic Med. 2017;00:1–6.
- - D. Kevin Horton, Shannon Graham, Reshma Punjani, Grete Wilt, Wendy Kaye, Kimberly Maginnis, Lauren Webb, Judy Richman, Richard Bedlack, Edward Tessaro & Paul Mehta (2017): A spatial analysis of amyotrophic lateral sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics, 2013. external icon.
- - Mehta P, Horton DK, Kasarskis EJ, et al. CDC Grand Rounds: National Amyotrophic Lateral Sclerosis (ALS) Registry Impact, Challenges, and Future Directions. external icon. MMWR Morb Mortal Wkly Rep 2017;66:1379–1382.
- - Brown C. Non-Familial ALS: A tangled web external icon. Nature 2017; doi:10.1038/550S109a. (Non-research)
  - Kaye W, Wagner L, Wu R, Mehta P. Evaluating the completeness of the national ALS registry, United States external icon . Amyotroph Lateral Scler Frontotemporal Degener; 2017; 112-117.
- - Laliberte R. The Power of Many: Data from patient registries help advance research and improve care external icon. Neurology Now 2017; 13(5): 32-36. (Non-research)
  - Parkin Kullmann JA & Pamphlett R. Does the index-to-ring finger length ratio (2D:4D) differ in amyotrophic lateral sclerosis (ALS)? Results from an international online case–control study external icon. BMJ Open 2017;7:e016924. doi: 10.1136/bmjopen-2017-016924.
  - Andrew A, Caller T, Tandan E, et al. Environmental and Occupational Exposures and Amyotrophic Lateral Sclerosis in New England external icon. Neurodegener Dis 2017; 17: 110–116
  - Kuczmarski T, Stommel E, Riley K, et al. Medical history of chemotherapy or immunosuppressive drug treatment reduces risk of amyotrophic lateral sclerosis (ALS)external icon. J Neurol, 2017, https://doi.org/10.1007/s00415-017-8564-2external icon
  - Torbick N, Ziniti B, Stommel E, et al. Assessing Cyanobacterial Harmful Algal Blooms as risk factors for Amyotrophic Lateral Sclerosisexternal icon. Neurotoxicity Reasearch. 2017 May 3. doi: 10.1007/s12640-017-9740-y. [Epub ahead of print].
- - Wagner KN, Nagaraja H, Allain DC, Quick A, Kolb S, Roggenbuck J. Patients with Amyotrophic Lateral Sclerosis Have High Interest in and Limited Access to Genetic Testingexternal icon. J Genet Counsel 2017; 26(3):604-611. doi: 10.1007/s10897-016-0034-y.
- - Marin B, Boumediene F, Logroscino G, et al. Variation in worldwide incidence of amyotrophic lateral sclerosis: a meta-analysisexternal icon Int Journal of Epidemiology 2017; 46(1):57-74. doi: 10.1093/ije/dyw061. .

- - - - Floeter MK, Bageac D, Danielian LE, Braun LE, Traynor BJ, Kwan JY. Longitudinal Imaging in C9orf72 Mutation Carriers: Relationship to Phenotype. NeuroImage: Clinical 2016; 12:1035-1043. doi.org/10.1016/j.nicl.2016.10.014external icon

- - - - Stephens HE, Lehman E, Raheja D, Yang C, Walsh S, Simmons Z. The Role of Mental Health and Self-efficacy in the Pain Experience of Patients with Amyotrophic Lateral Sclerosisexternal icon. Amyotroph Lateral Scler Frontotemporal Degener 2016; 17:3-4, 206-212. doi: 10.3109/21678421.2015.1131832. (Open Access Pending)

- - - - Wagner KN, Nagaraja H, Allain DC, Quick A, Kolb S, Roggenbuck J. Patients with Amyotrophic Lateral Sclerosis Have High Interest in and Limited Access to Genetic Testingexternal icon .J Genet Counsel 2016; doi: 10.1007/s10897-016-0034-y. (Open Access Pending)

- - - - Roberts A, Johnson N, Chen J, Cudkowicz M, Weisskopf M.
        Race/ethnicity, external iconsocioeconomic status, and ALS mortality in the United Statesexternal icon. Neurology 2016; doi.org/10.1212/WNL.0000000000003298.

- - - - Horton DK, Kaye W, and Wagner L. Integrating a Biorepository into the National Amyotrophic Lateral Sclerosis Registry . Journal of Environmental Health 2016, 79(4): 38-40.

- - - - Mehta P, Kaye W, Bryan L, Larson T, Copeland T, Wu J, Muravov M, Horton D. Prevalence of Amyotrophic Lateral Sclerosis – United States, 2012-2013 MMWR Surveillance Summary 65(SS08);1-16.

- - - - Marin B, Boumediene F, Logroscino G, et al. Variation in worldwide incidence of amyotrophic lateral sclerosis: a meta-analysisexternal icon Int Journal of Epidemiology 2016; doi: 10.1093/ije/dyw061.

- - - - Su F, Goutman S, Chernyak S, Mukherjee B, Callaghan B, Batterman S, Feldman E. Association of Environmental Toxins With Amyotrophic Lateral Sclerosis.external icon JAMA Neurol. Published online May 09, 2016. doi:10.1001/jamaneurol.2016.0594. Open access not currently available for this journal.

- - - - Bryan L, Kaye W, Antao V, Mehta P, Muravov O, Horton K. Preliminary Results of National ALS Registry Risk Factor Survey Dataexternal icon. PLOS One 2016, April 28:doi.org/10.1371/journal.pone.0153683.

Kaye W, Wagner L, Mehta P. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. Amyotroph Lateral Scler Frontotemporal Degener 2015 external icon; 16(Suppl. S1):146-159.

Weisskopf M, Cudkowicz M, Johnson N. Military Service and Amyotrophic Lateral Sclerosis in a Population-based Cohortexternal icon. Epidemiology 2015 26(6). doi: 10.1097/EDE.0000000000000376.

Parkin A, Hayes S, Wang X, Pamphlett R. Designing an Internationally Accessible Web-Based Questionnaire to Discover Risk Factors for Amyotrophic Lateral external icon

Oskarsson B, Horton DK, Mitsumoto H. Potential Environmental Factors in Amyotrophic Lateral Sclerosis. Neurol Clin. 2015 Nov;33(4):877-88. doi: 10.1016/j.ncl.2015.07.009.

Roberts A, Johnson N, Cudkowicz M, Eum K, Weisskopf M. Job-related formaldehyde exposure and ALS mortality in the USA.external icon J Neurol Neurosurg Psychiatry 2015. doi:10.1136/jnnp-2015-310750.

Rechtman L, Wagner L, Kaye W, Villanacci J. Updated Prevalence and Demographic Characteristics for ALS Cases in Texas, 2009–2011external icon .Southern Medical Journal 2015 108(8). doi: 10.14423/SMJ.0000000000000324.

Wagner L, Rechtman L, Jordan H, Ritsick M, Sanchez M, Sorenson E, Kaye, W. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillanceexternal icon .Amyotroph Lateral Scler Frontotemporal Degener 2015; Sep 23: 1-7. [Epub ahead of print].

Paulukonis ST, Roberts EM, Valle JP, Collins NN, English PB, Kaye WE. Survival and Cause of Death among a Cohort of Confirmed Amyotrophic Lateral Sclerosis Casesexternal icon .LoS ONE 2015 10(7): e0131965. doi:10.1371/journal.pone.0131965.

Henry K, Fagliano J, Jordan H, Rechtman L, Kaye WE. Geographic Variation of Amyotrophic Lateral Sclerosis Incidence in New Jersey, 2009–2011external icon . Am. J. Epidemiol 2015; doi:10.1093/aje/kwv095.

Jordan H, Rechtman L, Wagner L, Kaye WE. Findings from the Baltimore and Philadelphia Amyotrophic Lateral Sclerosis Surveillance Projects, 2009-2011external icon .Muscle & Nerve 2015;51:815-821.

Mehta P, Antao V, Kaye W, Sanchez M, Williamson D, Bryan L, Muravov M, Horton D. Prevalence of Amyotrophic Lateral Sclerosis — United States, 2010–2011external icon .American Journal of Public Health: June 2015, Vol. 105, No. 6, pp. e7-e9.

Freer C, Hilton T, Jordan H, Kaye W, Singh S, Huang Y. 2015. Results of Florida’s Amyotrophic Lateral Sclerosis Surveillance Projectexternal icon .BMJ Open.‎ 2015;5:e007359doi:10.1136/bmjopen-2014-007359.

Valle J, Roberts E, Collins N, Paulukonis S, English P, Kaye W. Epidemiology and Surveillance of Amyotrophic Lateral Sclerosis in Two Large Metropolitan Areas in Californiaexternal icon .Amyotroph Lateral Scler Frontotemporal Degener 2015; Early Online: 1-7.

Jordan H, Fagliano J, Rechtman L, Lefkowitz D, Kaye W. Effects of Demographic Factors on Survival Time after a Diagnosis of Amyotrophic Lateral Sclerosisexternal icon .Neuroepidemiology 44:114-120.

Rechtman L, Jordan H, Wagner L, Horton K, Kaye W. Racial and ethnic differences among Amyotrophic Lateral Sclerosis (ALS) cases in the United Statesexternal icon .Amyotroph Lateral Scler Frontotemporal Degener 2014 Dec 8 [Epub ahead of print].

Jordan H, Rechtman L, Fagliano J, Lefkowitz D, Kaye W. Population-based Surveillance of Amyotrophic Lateral Sclerosis in New Jersey, 2009-2011external icon .Neuroepidemiology 43:49-56.

Mehta P, Antao V, Kaye W, Sanchez M, Williamson D, Bryan L, Muravov M, Horton D. Prevalence of Amyotrophic Lateral Sclerosis – United States, 2010-2011. MMWR Surveillance Summary 63(SS07);1-14.

Malek A, Stickler D, Antao VC, Horton DK. The National ALS Registry: a recruitment tool for researchexternal icon .Muscle Nerve 2014;50:830–834.

Horton K, Mehta P, Antao VC. Quantifying a nonnotifiable disease in the United States: the National Amyotrophic Lateral Sclerosis Registry model.external icon JAMA 2014;312:1097–1098.

Yu Y, Su FC, Callaghan BC, Goutman SA, Batterman SA, Feldman EL. Environmental Risk Factors and Amyotrophic Lateral Sclerosis (ALS): A Case-Control Study of ALS in Michiganexternal icon .PLoS One. 2014 Jun 30;9(6):e101186. PMCID: PMC4076303.

Kaye WE, Sanchez M, Wu J. Feasibility of creating a National ALS Registry using administrative data in the United Statesexternal icon .Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:433–439.

Factor-Litvak P, Al-Chalabi A, Ascherio A, et al. Current pathways for epidemiological research in amyotrophic lateral sclerosisexternal icon .ALS Fronto Degen 2013;14(1):33-43.

Wittie M, Nelson LM, Usher S, Ward K, Benatar M. Utility of capture-recapture methodology to assess completeness of amyotrophic lateral sclerosis case ascertainment. Neuroepidemiologyexternal icon .2013;40(2):133-41.

Alexander V. Sherman, Amelie K. Gubitz, Ammar Al-Chalabi et al. Infrastructure resources for clinical research in amyotrophic lateral sclerosisexternal icon .Amyotrophic Lateral Sclerosis and Frontotemporal Degenerations 2013; 14(Suppl. 1): 53–61.

Antao V, Horton K. The National Amyotrophic Lateral Sclerosis (ALS) Registry. J Environ Health 2012;75(1):28-30

Stickler D, Royer J, Hardin J. Accuracy and usefulness of ICD-10 death certificate coding for the identification of patients with ALS: results from the South Carolina ALS Surveillance Pilot Projectexternal icon . Amyotroph Lateral Scler 2012;13(1):69-73.

Stickler D, Royer J, Hardin J. Validity of hospital discharge data for identifying cases of amyotrophic lateral sclerosisexternal icon .Muscle & Nerve 2011;44(5):814–815.

Benatar M, Wuu J, Usher S, Ward K. Preparing for a U.S. National ALS Registry: lessons from a pilot project in the State of Georgiaexternal icon .Amyotroph Lateral Scler 2011;12(2):130-135.

Page last reviewed: December 7, 2021

Content source: Agency for Toxic Substances and Disease Registry