Abstracts

• Urvi Desai, Benjamin Brooks. COVID-19 Amyotrophic Lateral Sclerosis (ALS) Registry NCT04559009 (P3-13.007). Presented at the American Academy of Neurology, May 3, 2022.
• Alex Berger, Ervin Sinani, Igor Katsovskiy, Jaime Raymond, Derek D’Agostino, Natalia Tarasenko, Paul Mehta, Alexander Sherman. Public-Private Collaboration in ALS Research by GUID Utilization Paves the Road to Patient-Centric Precision Research in Neurological Diseases (P4-5.001). Presented at the American Academy of Neurology, May 3, 2022.
• Moon Han, Jaime Raymond, Theodore Larson, Paul Mehta, D Kevin Horton. Examination of Participant Demographics and ALS Symptom Characteristics from Pooled Resource Open-Access ALS Clinical Trials and National ALS Registry (P4-5.003). Presented at the American Academy of Neurology, May 3, 2022.

• Paul Mehta, Jaime Raymond, Kevin Horton, Larson J. The United States National Amyotrophic Lateral Sclerosis (ALS) Registry Advances Research Domestically and Internationally. Presented at the MDA Clinical and Scientific Conference, Orlando, FL, March 22-25, 2020.
• Paul Mehta, Jaime Raymond, Bryn Davis, Ted Larson, Kevin Horton. Challenges and Limitations of Ascertaining Amyotrophic Lateral Sclerosis (ALS) Cases in the United States (842). Available at https://n.neurology.org/content/94/15_Supplement/842.abstract.
• Ted Larson, Tracy Peters, Maureen Orr, Jaime Raymond, Stephen Goutman, Paul Mehta, Kevin Horton. A Comparison of Blood Metal Levels from Patients in the National Amyotrophic Lateral Sclerosis (ALS) Biorepository with Participants in the National Health and Nutrition Examination Survey (779). Available at https://n.neurology.org/content/94/15_Supplement/779.
• Jaime Raymond, Paul Mehta, Ted Larson, Kevin Horton. Physical Activity and early onset amyotrophic lateral sclerosis (ALS), Data from the National ALS Registry: 2010 – 2018 (777). Available at https://n.neurology.org/content/94/15_Supplement/777.
• Jaime Raymond, Paul Mehta, Ted Larson, Erik Pioro, Kevin Horton. Gender, reproductive history, and early onset amyotrophic lateral sclerosis (ALS), Data from the National ALS Registry: 2010 – 2018 (1138). Available at https://n.neurology.org/content/94/15_Supplement/1138.abstract.

Raymond J, Mehta P, Horton K. Clinical Characteristics of a Large Cohort of US Patients Enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010-2015. Presented at the American Academy of Neurology, Philadelphia, PA, May 8, 2019.

Punjani R, Horton K, Kaye W. Population Based Surveillance and Survival Characteristics of Amyotrophic Lateral Sclerosis (ALS) Cases in the Atlanta Metropolitan Area, 2009 – 2011. Presented at the American Academy of Neurology, Philadelphia, PA, May 8, 2019.

Kaye W, Mehta P, Raymond J. How the National Amyotrophic Lateral Sclerosis (ALS) Registry Can Help with Your Research. Presented at the American Academy of Neurology, Philadelphia, PA, May 8, 2019.

Kaye W, Raymond J, Jordan H. An Analysis of Free-text Responses by Individuals Enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry. Presented at the American Academy of Neurology, Philadelphia, PA, May 8, 2019.

Crayle J, Raymond J, Mehta P, Bedlack R. Update of Study of ALS Reversals: LifeTime Exposures (StARLiTE). Presented at the American Academy of Neurology, Philadelphia, PA, May 8, 2019.

Mehta P, Raymond J, Larson T, Horton K. Physical Activity and early onset amyotrophic lateral sclerosis (ALS), Data from the National ALS Registry: 2010 – 2018. Presented at the Northeast ALS Consortium Annual Meeting, Clearwater Beach, FL, September 30 – October 2, 2020.

Horton K, Mehta P, Larson T. Utilizing Capture-Recapture Methodology to Estimate the Missing ALS Prevalent Cases in the United States, 2016. Presented at the International ALS/MND Symposium, Perth, Australia, December 4 – 6, 2020.

Mehta P, Larson T, Mehta P. Prevalence of Amyotrophic Lateral Sclerosis (ALS) in the United States, 2016. Presented at the International ALS/MND Symposium, Perth, Australia, December 4 – 6, 2020.

Horton K, Graham S, Punjani R, Wilt G, Kaye W, Maginnis K, Webb L, Richman J, Bedlack R, Tessaro E, Mehta P. A spatial analysis of amyotrophic lateral sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics, 2013. Presented at the American Academy of Neurology Conference; Los Angeles, California, April 26, 2018. P5.660.

Kaye W, Wagner L, Wu R, Mehta P. Evaluating the completeness of the national ALS registry, United States. Presented at the American Academy of Neurology Conference; Los Angeles, California, April 26, 2018. P5.168.

Kaye W, Wagner, Stein, T. Successful Postmortem Collection of Neurological Tissues: The National ALS Biorepository Experience. Presented at the American Academy of Neurology Conference; Los Angeles, California, April 25, 2018. P4.437.

Horton K, Graham S, Punjani R, Wilt G, Kaye W, Maginnis K, Webb L, Richman J, Bedlack R, Tessaro E, Mehta P. A spatial analysis of amyotrophic lateral sclerosis (ALS) cases in the United States and their proximity to multidisciplinary ALS clinics, 2013. Presented at the 28th International Symposium on ALS/MND; December 8-10, 2017; Boston, Massachusetts.

Larson T, Mehta P, Horton K. . United States: Prevalence of Amyotrophic Lateral Sclerosis (ALS) – United States, 2012 – 2013. Presented at the 28th International Symposium on ALS/MND; December 8-10, 2017; Boston, Massachusetts.

Raymond J, Mehta P, Horton K. Dissemination of Data by the National ALS Registry. Presented at the Northeast ALS Annual Meeting; Clearwater Beach, FL, October 3-5, 2017.

Larson T, Mehta P, Horton K. A Survival Model for US Patients Enrolled in the National ALS Registry Web Portal. Presented at the American Academy of Neurology Conference; Boston, Massachusetts, April 26, 2017. P4.315.

Kaye WE, Wagner L., Stein T, Traynor B, Orr M. National Amyotrophic Lateral Sclerosis (ALS) Biorepository. 26th International Symposium on ALS/MND. Boston, MA, December 8-11, 2017.

Kaye WE, Wagner L., Stein T, Bell T, Buehrer B, Orr M. Successful Postmortem Tissue Collection: the National ALS Biorepository Experience. Leaders in BioBanking Congress. Nashville, TN, October 25-27, 2017.

Kaye W, Wagner L, Stein T, Orr M. National Amyotrophic Lateral Sclerosis (ALS) Biorepository. 16th Annual Northeast ALS (NEALS) Consortium Meeting. Clearwater, FL, October 3-5, 2017.

Mehta P, Kaye W, Bryan L, Larson T, Copeland T, Wu J, Horton K. United States: Prevalence of Amyotrophic Lateral Sclerosis (ALS) – United States, 2012 – 2013. Presented at the 27th International Symposium on ALS/MND; December 7-9, 2016; Dublin, Ireland.

Larson T, Mehta P, Horton, K. A Survival Model for US Patients Enrolled in the National ALS Registry Web Portal. Presented at the Northeast ALS Annual Meeting, Clearwater Beach, FL, October 4, 2015.

Larson T, Kaye W, Mehta P, Horton K. Amyotrophic Lateral Sclerosis Mortality in the United States, 2011-2013. The American Academy of Neurology Conference; Vancouver, Canada, April 20, 2016. P5.088. http://www.neurology.org/content/86/16_Supplement/P5.087.short

Kaye W, Wagner L, Stein T, Mehta, P. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. The American Academy of Neurology Conference; Vancouver, Canada, April 20, 2016. P5.094. http://www.neurology.org/content/86/16_Supplement/P5.094.short

Kaye W, Wagner L, Mehta P, Horton DK. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. 15th Annual Northeast ALS (NEALS) Consortium Meeting. Clearwater, FL, October 5.7, 2016.

Kaye WE, Wagner L., Stein T, Mehta P. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. Annual Meeting of the American Academy of Neurology (AAN). Vancouver, BC, Canada, April 15–21, 2016.

Mehta P, Antao V, Horton K. Update on the United States National Amyotrophic Lateral Sclerosis (ALS) Registry. Presented at the Presented at the 26th International Symposium on ALS/MND; December 11-13, 2015; Orlando, FL. http://www.tandfonline.com/doi/abs/10.3109/21678421.2015.1098813

Kaye W, Wagner L, Mehta P. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. Presented at the Presented at the 26th International Symposium on ALS/MND; December 11-13, 2015; Orlando, FL. http://www.tandfonline.com/doi/abs/10.3109/21678421.2015.1098813

Bryan L, Mehta P, Antao V, Kaye W, Sanchez M, Muravov O, Horton K. Potential Risk Factors among Adults with Amyotrophic Lateral Sclerosis (ALS). The American Academy of Neurology Conference; Washington DC, April 22, 2015. P4.136. http://www.abstracts2view.com/aan/view.php?nu=AAN15L1_P4.136&terms=

Mehta P, Antao, V, Horton K. Recruiting Patients for Research, Clinical Trials, and Epidemiological Studies Using the National Amyotrophic Lateral Sclerosis (ALS) Registry. The American Academy of Neurology Conference; Washington DC, April 22, 2015. P4.150. http://www.abstracts2view.com/aan/view.php?nu=AAN15L1_P4.150&terms=

• Kaye WE, Wagner L. National Amyotrophic Lateral Sclerosis (ALS) Biorepository Feasibility Study. The American Neurological Association (ANA) Annual Meeting. Baltimore, MD, October 11-13, 2014. S715. http://onlinelibrary.wiley.com/doi/10.1002/ana.24247/abstract
• Jordan H, Rechtman L, Wagner L, Kaye W. Findings from the Baltimore and Philadelphia Amyotrophic Lateral Sclerosis Surveillance Projects. The American Neurological Association (ANA) Annual Meeting. Baltimore, MD, October 11-13, 2014. S714. http://onlinelibrary.wiley.com/doi/10.1002/ana.24247/abstract
  
• Mehta P, Antao VC, Sanchez M, Horton K. United States: Prevalence of Amyotrophic Lateral Sclerosis (ALS), October 19, 2010 – December 31, 2011. Presented at the 25th International Symposium on ALS/MND; December 5-7, 2014; Brussels.
• Mehta P, Antao VC, Sanchez M, Horton K. Prevalence of Amyotrophic Lateral Sclerosis (ALS) in the United States. Presented at the 13th Annual Northeast ALS Consortium Meeting; October 22-24, 2014; Clearwater, FL.
• Using the National Amyotrophic Lateral Sclerosis Registry as a Subject Recruitment Tool for Research D. Kevin Horton, Vinicius Antao, Paul Mehta:
• Enhancements to the U.S.National Amyotrophic Lateral Sclerosis (ALS) Registry Paul Mehta, Vinicius Antao,D. Kevin Horton:
• Verification of Amyotrophic Lateral Sclerosis (ALS) Cases Reported to the State and Metropolitan Area ALS Surveillance Projects Wendy Kaye, Laurie Wagner, Vinicius Antao, Eric Sorenson:
• State and Metropolitan Area-based Amyotrophic Lateral Sclerosis (ALS) Surveillance Laurie Wagner, Wendy Kaye,Heather Jordan, Lindsay Rechtman, Maggie Ritsick, Marchelle Sanchez:
• National ALS Biorepository Feasibility Study Wendy Kaye, Laurie Wagner
• Findings from the New Jersey State-wide Amyotrophic Lateral Sclerosis (ALS) Surveillance Project Heather Jordan,Jerald Fagliano, Daniel Lefkowitz, Lindsay Rechtman, Wendy Kaye:
• Racial and Ethnic Differences Across Amyotrophic Lateral Sclerosis (ALS) Cases from Three State and Eight Metropolitan Area Surveillance Projects Lindsay Rechtman, Heather Jordan, Laurie Wagner, D. Kevin Horton, Wendy Kaye:
• Using Mortality Data as a Component of Amyotrophic Lateral Sclerosis (ALS) Surveillance in New Jersey (NJ) Heather Jordan, Jerald Fagliano, Daniel Lefkowitz, Lindsay Rechtman, Wendy Kaye:
• Mortality and Cause of Death Among Confirmed ALS Cases, Los Angeles and San Francisco Bay Area Metropolitan ALS Surveillance Project 2009-2011 Susan Paulukonis, Jhaqueline Valle, Natalie Collins, Eric Roberts, Paul English, Wendy Kaye:

MDA Clinical Conference:

• Recruiting Subjects via the National Amyotrophic Lateral Sclerosis (ALS)Registry Paul Mehta, D. Kevin Horton, & Vinicius Antao

• Sanchez MS, Antao VC, Kaye WE, Muravov O, Horton DK. Amyotrophic Lateral Sclerosis (ALS) Estimates from National Databases in the United States from 2001 to 2010. Amyotroph Lateral Scler Frontotemporal Degener 2013;14(Suppl. 2):137. Presented at the 24th International Symposium on ALS/MND; December 6-8, 2013; Milan.
• Antao VC, Sanchez MS, Kaye WE, Muravov OI, and Horton DK. Updates on the U.S. National Amyotrophic Lateral Sclerosis (ALS) Registry. Presented at the Presented at the 24th International Symposium on ALS/MND; December 6-8, 2013; Milan.
• Sanchez ME, Antao VC, Kaye WE, Muravov O, Horton DK. Amyotrophic Lateral Sclerosis (ALS) Estimates from National Databases in the United States – 2001–2009. Presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.Posters also presented:
  • Kaye W and Wagner L. National ALS Biorepository Feasibility Study. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Muravov OI, Antao VC, Sanchez ME, Kaye WE, Horton DK. Updates on the U.S. National Amyotrophic Lateral Sclerosis (ALS) Registry. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Wagner L, Kaye W, Durbin J, Garlenski B, Jordan H, Rechtman L, Paulukonis S, Horton K. Metropolitan Area Based Surveillance for Amyotrophic Lateral Sclerosis (ALS) – United States. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Jordan H, Fagliano J, Lefkowitz D, Rechtman L, Kaye W. Findings from the New Jersey State-Wide Amyotrophic Lateral Sclerosis (ALS) Surveillance Project. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Jordan H, Rechtman L, Wagner L, Kaye W. Preliminary Findings from the Philadelphia and Baltimore Amyotrophic Lateral Sclerosis (ALS) Surveillance Projects. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Antao VC, Sanchez M, Muravov OI, Horton DK. National Amyotrophic Lateral Sclerosis Registry’s Research Notification Mechanism. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Collins N, Paulukonis S, Valle J, English P, Kaye W. Los Angeles and San Francisco Bay Area Amyotrophic Lateral Sclerosis (ALS) Surveillance. Poster presented at the 12th Annual Northeast ALS Consortium Meeting; October 2-4, 2013; Clearwater, FL.
  • Jordan H, Fagliano J, Lefkowitz D, Rechtman L. Findings from the New Jersey (NJ) State-Wide Amyotrophic Lateral Sclerosis (ALS) Surveillance Project. Poster presented at the Annual Meeting of the APHA. Boston, MA; November 2013.
  • Rechtman L, Jordan H, Wagner L, Kaye W. Preliminary Findings from the Philadelphia Amyotrophic Lateral Sclerosis Surveillance Project. Poster presentation at the joint annual meeting of the International Congress of Interventional Neurology and Pennsylvania Neurological Society. Philadelphia, PA; October 2013.
  • Fagliano J, Jordan H, Lefkowitz D, Rechtman L, Kaye W. Findings from the New Jersey (NJ) State-Wide Amyotrophic Lateral Sclerosis (ALS) Surveillance Project. Poster presentation at the annual conference of the Council of State and Territorial Epidemiologists (CSTE). Pasadena, CA; June 2013. Selected as an award finalist.

• Kaye W, Sorenson E, Freer C, Jordan H, Keralis J. State-based surveillance for amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler 2012;13(Suppl. 1):127;P136. Abstract.
• Sanchez M, Kaye W, Antao V, Muravov O, Horton K. Using National Death Index (NDI) data to identify individuals with amyotrophic lateral sclerosis (ALS) and vital status of people in the National ALS Registry. Presented at the 140th American Public Health Association Annual Meeting; October 27-31, 2012; San Francisco. Abstract available at https://apha.confex.com/apha/140am/webprogram/Paper266996.html
• Jordan H, Fagliano J, Lefkowitz D, Rechtman R, Kaye W. Preliminary findings from the New Jersey (NJ) Amyotrophic Lateral Sclerosis (ALS) Surveillance Project (Project). Poster presented at the 11^th Annual Northeast ALS Consortium Meeting; October 25-26, 2012; Clearwater, FL.
• Jordan H, Freer C, Rechtman L, Singh S, Kaye W. State-based amyotrophic lateral sclerosis (ALS) surveillance implementation: methods, unique experiences, and lessons learned in Florida and New Jersey. Poster presented at the 11th Annual Northeast ALS Consortium Meeting; October 25-26, 2012; Clearwater, FL
• Freer C, Singh S, Moise M, Hylton T, Huang Y, Kaye W. A snapshot of amyotrophic lateral sclerosis (ALS) in Florida, 2009-2011: results of Florida’s state-based ALS surveillance project. Poster presented at the 11th Annual Northeast ALS Consortium Meeting; October 25-26, 2012; Clearwater.
• Kaye W, Sorenson E, Jordan H, Tyler B, Wagner L, Muravov O. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance. Neurology 2012;78:P01.094. Abstract.
• Muravov O, Horton K. An overview of the National Amyotrophic Lateral Sclerosis (ALS) Registry and its new initiatives. Neurology 2012;78:P01.092. Abstract.

• Horton K, Muravov O, Kaye W, Sanchez M, Antao V. Development of a biorepository component of the National Amyotrophic Lateral Sclerosis (ALS) Registry in the United States. Presented at the 22nd International Symposium on ALS/MND; November 30 – December 2, 2011; Sydney.
• Horton K, Muravov O, Sanchez M, Antao V, Kaye W. Determining the feasibility of a National Amyotrophic Lateral Sclerosis Registry through four pilot projects. Presented at the 139^th American Public Health Association Annual Meeting; October 29 – November 2, 2011; Washington, DC. Abstract available at https://apha.confex.com/apha/139am/webprogram/Paper236836.html
  
• Kaye W, Sorenson E, Galvin C, Jordan H, Keralis J, Muravov O. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance. Presented at the 10^th Annual Northeast ALS Consortium Meeting; October 27-28, 2011; Clearwater.
• Kaye W, Johnson G, Horton K. National Amyotrophic Lateral Sclerosis (ALS) Registry clinical research mechanism. Presented at the 10th Annual Northeast ALS Consortium Meeting; October 27-28, 2011; Clearwater.
• Horton K, Muravov O, Sanchez M, Kaye W. Implementation of a national ALS registry using existing data sources – a novel approach. Presented at the Council of State and Territorial Epidemiologists Annual Meeting; June 12-16, 2011; Pittsburgh.
• Horton, D, Muravov O, Sanchez M, Antao V. Implementation of the National Amyotrophic Lateral Sclerosis (ALS) Registry. Neurology 2011;76:A369. Abstract.
• Kaye W, Sorenson E, Fagliano J, Huang Y, Sajak T, Horton K. State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance. Presented at the 63^rd American Academy of Neurology Annual Meeting; April 9-16, 2011; Honolulu.

• Horton K, Muravov O, Kaye W, Sanchez M. Implementation of a national amyotrophic lateral sclerosis registry. Amyotroph Lateral Scler 2010;11(Suppl 1):119;P115. Abstract.
• Horton K, Muravov O, Kaye W, Sanchez M. Implementation of the National Amyotrophic Lateral Sclerosis (ALS) Registry. Presented at the 138^th American Public Health Association Annual Meeting; November 6-10, 2010; Denver. Abstract available at http://apha.confex.com/apha/138am/webprogram/Paper222082.html
• Horton K, Muravov O, Sanchez M. Implementation of the National Amyotrophic Lateral Sclerosis (ALS) Registry. Presented at the 9th Annual Northeast ALS Consortium Meeting; November 2010; Bethesda.

• Usher S, Ward K, Wu J, Muravov O, Kaye W, Benatar M. Georgia ALS registry: a feasibility study. Presented at the 20^th International Symposium on ALS/MND. Abstracts from Theme 12: Clinical Work in Progress & Scientific Work in Progress: 20-21; December 8-10, 2009; Berlin, Germany.
• Muravov, O. The path to a national ALS registry in the United States. Presented at the 7^th European ALS Congress; May 22-24, 2009; Turin, Italy.
• Wittie M, Usher S, Ward K, Muravov O, Kaye W, Benatar M. Use of Capture-Recapture Methods to estimate amyotrophic lateral sclerosis prevalence in Georgia. Presented at the 61^st American Academy of Neurology Meeting; April 25-May 2, 2009; Seattle.

• Muravov O, Kaye W, Wu J. Evaluating the feasibility of developing a national ALS registry in the United States. Presented at the 19^th International Symposium on ALS/MND. Abstracts from Theme 11: Clinical Work in Progress & Care Practice & Scientific Work in Progress: 22-23; November 3-5, 2008; Birmingham, UK.