Presentations at Professional Conferences | ALS Natural History Study

2025 Presentations

Conferences include the MND Association (MNDA) International Symposium on ALS/MND and the Annual Northeast ALS Consortium (NEALS) Meeting.

Differential Impact of Riluzole Use on Incident versus Prevalent Cases in the ALS/MND Natural History Consortium Dataset

Kelly Duffy, Andres Arguedas Levia, Annette Xenopoulos-Oddsson, Ximena Arcila-Londono, James Wymer, Nicholas Olney, Senda Ajroud-Driss, Ghazala Hayat, Terry Heiman-Patterson, Mehdi Ghasemi, Alex Sherman, Erjia Cui, Mark Fiecas, David Walk, Kelly Gwathmey

Presented at NEALS and MNDA. Full abstract published in Muscle & Nerve, Abstract #140.

Time-to-Event Analysis of Clinical Milestones in the ALS/MND Natural History Consortium Dataset

Presented at NEALS and MNDA. Full abstract published in Muscle & Nerve, Abstract #125.

An Interactive Dashboard for Dynamic Individualized Prediction Models for Times-to-Event in ALS Clinical Milestones

Kelly Duffy, David Schneck, Andres Arguedas Levia, Annette Xenopoulos-Oddsson, Ximena Arcila-Londono, James Wymer, Nicholas Olney, Senda Ajroud-Driss, Ghazala Hayat, Terry Heiman-Patterson, Mehdi Ghasemi, Alex Sherman, Kelly Gwathmey, Erjia Cui, Mark Fiecas, David Walk

Presented at NEALS. Full abstract published in Muscle & Nerve, Abstract #124.

Cognitive and Behavioral Impairment in ALS: Associations with Survival and Supportive Intervention Uptake

John Furey, Joshua Miller, Terry Heiman-Patterson, Kaelin Wolf

Presented at NEALS. Full abstract published in Muscle & Nerve, Abstract #82.

Are Plateaus Common? A Multicenter Real-World Retrospective Analysis

Christopher Pizzica, John Furey, Terry Heiman-Patterson

Presented at NEALS. Full abstract published in Muscle & Nerve, Abstract #121.

Predicting ALS Survival Using Combined ALSFRS-R Slope and NfL: Insights from the ALS/MND Natural History Consortium's Data and Biofluid Collection Study

Andres Arguedas, Danni Li, Kelly Duffy, Annette Xenopoulos-Oddsson, James Wymer, Terry Heiman-Patterson, Ghazala Hayat, Mehdi Ghasemi, Tawfiq Al-Lahham, Senda Ajroud-Driss, Nicholas Olney, Ximena Arcila-Londono, Kelly Gwathmey, Alex Sherman, Mark Fiecas, Erjia Cui, David Walk

Presented at NEALS and MNDA. Full abstract published in Muscle & Nerve, Abstract #21.

Phenotypic Heterogeneity and ALS/MND Subtypes: Potential Impact on ALS Research and Clinical Trial Design

Rosenfeld J.

Joint session invited lecture at MNDA.

2024 Presentations

Time-to-event prediction in ALS using a landmark modeling approach, using the ALS Natural History Consortium Dataset

Presented by David Schneck, Andres Arguedas, Annette Xenopoulos-Oddsson, Ximena Arcila-Londono, Chris tian Lunetta, James Wymer, Nicholas Olney, Kelly Gwathmey, Senda Ajroud-Driss, Ghazala Hayat, Terry Heiman-Patterson, Federica Cerri, Christina Fournier, Jonathan Glass, Alex Sherman, Mark Fiecas, and David Walk.

Takeaway: We developed dynamic prediction models via Landmark time-to-event analysis for several intermediate events in ALS disease progression that can be used for clinical trial modeling and personal planning. Model outcomes included time to loss of ambulation, loss of speech, time to gastrostomy, Non-Invasive Ventilation (NIV) use, and continuous NIV use. Our models were internally validated with cross validation techniques and externally validated using the Emory University dataset.

Treatment Patterns and Outcomes of Intravenous Edaravone–Treated People With Amyotrophic Lateral Sclerosis in the ALS/MND Natural History Consortium

Presented by Alexander V Sherman, Jeffrey Zhang, Ying Liu, Alex Berger, Kinjal Patel, Malgorzata Ciepielewska, Stephen Apple, and the ALS Natural History Consortium Investigator Authors: Ximena Arcila-Londono, Kathryn Forsman, Ghazala Hayat, Tyler Regan, Nicholas Olney, James Wymer, Kelly Gwathmey, Federica Cem, Christian Lunetta, Terry Heiman-Patterson, Senda Ajroud-Driss, and David Walk at the MDA Conference.

Full abstract available on the MDA Conference website.

2023 Presentations

Time-to-Event Prediction in ALS Using a Landmark Modeling Approach, Using the ALS Natural History Consortium Dataset

Presented by David Schneck, Andres Arguedas, Annette Xenopoulos-Oddsson, Mark Fiecas, David Walk, and the ALS Natural History Consortium Investigators.

Full abstract published in Muscle & Nerve - Abstract #156

Time-to-event prediction in ALS using a semi-competing risks modeling approach, using the ALS Natural History Consortium dataset

Presented by Andres Arguedas, David Schneck, Annette Xenopoulos-Oddsson, Mark Fiecas, David Walk, and the ALS Natural History Consortium Investigators

Full abstract published in Muscle & Nerve - Abstract #157

ALS Natural History Database Supports the Common Plateaus in ALS

Presented by John Furey, Terry Heiman-Patterson, Zachary Farber, and the ALS/MND NHC

Full abstract published in Muscle & Nerve - Abstract #86

Healthcare Disparities in ALS (2023)

Presented by John Furey, Zachary Farber, Taylor Plenty, Hannah Henderson, Xiaoning Lu, Daohai Yu, Terry Heiman-Patterson, ALS/MND Natural History Consortium

Full abstract published in Muscle & Nerve - Abstract #50

Real World Data as a control group, an ALS case study

Presented by Matteo Locatelli, Alex Berger, Alexander Sherman in 2023 at the Annual Meeting of the American Academy of Neurology

Full abstract published in Neurology - Abstract P10-8.012

Effect of Acetyl L-Carnitine on the MITOS Staging Presentation

Presented by Matteo Locatelli, Alex Berger, Alex Sherman, Maurizio Grassano at the 22nd Annual Meeting of the Northeast ALS Consortium

Full abstract published in Muscle & Nerve - Abstract #121

Real-World Evidence on Treatment Patterns, Clinical Outcomes, and Patient-Reported Outcomes of Intravenous Edaravone–Treated People With Amyotrophic Lateral Sclerosis in the ALS/MND Natural History Consortium Registry Database

Presented by Alexander V. Sherman, Jeffrey Zhang, Ying Liu, Alex Berger, Matteo Locatelli, Kinjal Patel, Malgorzata Ciepielewska, Stephen Apple at the 22nd Annual Meeting of the Northeast ALS Consortium

Full abstract published in Muscle & Nerve - Abstract #87

Survival Analysis Methods in Natural History Studies

Presented by Alex Berger, David Walk, Matteo Locatelli, Alexander Sherman at the 2023 Annual Meeting of the American Academy of Neurology

Full abstract published in Neurology - Abstract P1-5.030

Analyzing the use of statins and survival in people living ALS using real-world data

Presented by Alex Berger, Matteo Locatelli, Christian Lunetta, and Alexander Sherman at the 2023 European Network to Cure ALS (ENCALS) Meeting.

Methods to test for causality in Amyotrophic Lateral Sclerosis: A Real-World Data example using ALS Natural History Study and MiToS Staging

Presented by Matteo Locatelli, Christian Lunetta, Alex Berger, and Alexander Sherman at the 2023 ENCALS Meeting.

2022 Presentations

Healthcare Disparities in ALS (2022)

Presented by Hannah Henderson, John Furey, Terry Heiman-Patterson, Ximena Arcila-Londono, Iram Zaman, Ghazala Hayat, Kelly Gwathmey, and additional investigators from the ALS Natural History Consortium

Full abstract published in Muscle & Nerve - Abstract #59

Retrospective analysis of prevalence and influence of cognitive involvement in ALS

Authors: John Furey, Terry Heiman-Patterson, and the ALS/MND Natural History Consortium

Full abstract published in Muscle & Nerve - Abstract #75

ALS Phenotype and Natural History Data from the ALS Natural History Consortium Clinic-Derived Cohort

Authors: David Walk, Alex Berger, Eric Macklin, Ervin Sinani, Matteo Locatelli, Natalia Tarasenko, Alex Sherman, and Investigators from the ALS/MND Natural History Consortium at the 21st Annual Meeting of the Northeast ALS Consortium
Full abstract published in Muscle & Nerve - Abstract #126