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Research Article

Evaluating the completeness of the national ALS registry, United States

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Pages 112-117 | Received 27 Apr 2017, Accepted 15 Sep 2017, Published online: 11 Oct 2017

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Read on this site (7)

Gary L. Pattee, Angela Genge, Philippe Couratier, Christian Lunetta, Gen Sobue, Masashi Aoki, Hiide Yoshino, Carlayne E. Jackson, James Wymer, Alejandro Salah & Sally Nelson. (2023) Oral Edaravone – Introducing a Flexible Treatment Option for Amyotrophic Lateral Sclerosis. Expert Review of Neurotherapeutics 0:0, pages 1-8.
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Paul Mehta, Jaime Raymond, Reshma Punjani, Moon Han, Theodore Larson, Wendy Kaye, Lorene M. Nelson, Barbara Topol, Oleg Muravov, Corina Genson & D. Kevin Horton. (2023) Prevalence of amyotrophic lateral sclerosis in the United States using established and novel methodologies, 2017. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 24:1-2, pages 108-116.
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Betts Peters, Kerth O’Brien & Melanie Fried-Oken. (2022) A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disability and Rehabilitation: Assistive Technology 0:0, pages 1-14.
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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 22:7-8, pages 535-544.
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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 20:5-6, pages 413-420.
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Rituparna Bhattacharya, Raymond A. Harvey, Keli Abraham, Jon Rosen & Paul Mehta. (2019) Amyotrophic lateral sclerosis among patients with a Medicare Advantage prescription drug plan; prevalence, survival and patient characteristics. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 20:3-4, pages 251-259.
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Articles from other publishers (9)

Betts Peters, Jack Wiedrick & Carolyn Baylor. (2023) Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis. American Journal of Speech-Language Pathology 32:4, pages 1450-1465.
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Meifang Li, Xun Shi, Jiang Gui, Chao Song, Angeline S. Andrew, Erik P. Pioro, Elijah W. Stommel, Maeve Tischbein & Walter G. Bradley. (2022) A new method for estimating under-recruitment of a patient registry: a case study with the Ohio Registry of Amyotrophic Lateral Sclerosis. Scientific Reports 12:1.
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Lorene M. Nelson, Barbara Topol, Wendy Kaye, Jaime Raymond, D. Kevin Horton, Paul Mehta & Todd Wagner. (2022) Evaluation of the Completeness of ALS Case Ascertainment in the US National ALS Registry: Application of the Capture-Recapture Method. Neuroepidemiology 56:2, pages 104-114.
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Suzanne F. Cook, Thomas Rhodes, Courtney Schlusser, Steve Han, Chao Chen, Neta Zach, Venkatesha Murthy & Shreya Davé. (2021) A Descriptive Review of Global Real World Evidence Efforts to Advance Drug Discovery and Clinical Development in Amyotrophic Lateral Sclerosis. Frontiers in Neurology 12.
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Jaime Raymond, Paul Mehta, Ted Larson, Erik P. Pioro & D. Kevin Horton. (2021) Reproductive History and Age of Onset for Women Diagnosed with Amyotrophic Lateral Sclerosis: Data from the National ALS Registry: 2010–2018. Neuroepidemiology 55:5, pages 416-424.
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Benjamin Rix Brooks & Jerome E. Kurent. 2021. Public Policy in ALS/MND Care. Public Policy in ALS/MND Care 301 326 .
Sandra Carrera-Juliá, Mari Luz Moreno, Carlos Barrios, Jose Enrique de la Rubia Ortí & Eraci Drehmer. (2020) Antioxidant Alternatives in the Treatment of Amyotrophic Lateral Sclerosis: A Comprehensive Review. Frontiers in Physiology 11.
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Lindsay Rechtman, Heather Jordan, Wendy Kaye, Maggie Ritsick & Paul Mehta. (2018) Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign. Journal of Patient Experience 7:1, pages 71-82.
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Paul MehtaWendy KayeJaime RaymondReshma PunjaniTheodore LarsonJessica CohenOleg MuravovKevin Horton. (2018) Prevalence of Amyotrophic Lateral Sclerosis — United States, 2015. MMWR. Morbidity and Mortality Weekly Report 67:46, pages 1285-1289.
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