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.

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.

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 [68(S1):S73-4 | 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 [68(S1):S74 | 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 [68(S1):S41 | 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 [68(S1):S26 | 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 [100(17 suppl. 2):2069 | 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 [68(S1):S57 | 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 [68(S1):S42 | 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 [100(17 Suppl. 2):4380 | 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

Full abstract available online (#209)

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

Full abstract available online (#276)

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 [66(S2):S27 | 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 [66(S2):S34-5 | Abstract #75]

Presented in 2022 at the 21st Annual Meeting of the Northeast ALS Consortium by Furey et al. 

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
Conference: 21st Annual Meeting of the Northeast ALS Consortium 
Published: November 2022  
In: Muscle & Nerve [66(S2):S56-7 | Abstract #126]