好色先生

好色先生

Explore the latest content from across our publications

Log In

Forgot Password?
Create New Account

Loading... please wait

Abstract Details

General Characteristics of edaravone Use in the Natural History of ALS and Other Motor Neuron Disorders Consortium Dataset (NeuroBANK™)
Neuromuscular and Clinical Neurophysiology (EMG)
S5 - Therapeutics in ALS and SMA (1:55 PM-2:06 PM)
006

The ALS Natural History Study protocol was developed with the goal of sharing longitudinal natural history data from several ALS multidisciplinary clinics participating in the ALS Natural History Consortium.

 Edaravone was approved by the FDA in May 2018 as a new treatment for ALS. There is not yet much data available regarding edaravone use in the United States. We report on edaravone use in our clinics since its approval.

To report percentage and general information on patients receiving edaravone in the clinics members of ALS Natural History Study Consortium.

All patients followed regularly in seven multidisciplinary ALS clinics are being offered participation in the study. Consenting participants are assigned a Neurological Global Unique Identifier (NeuroGUID), and a predefined clinical dataset is captured in NeuroBANK™.  All medications, including edaravone, are recorded. 

The dataset will be queried for edaravone use, duration of use, and selected clinical and demographic information.

As July of 2018, 105 of 419 consented PALS had received edaravone. Ten PALS were not included due to incomplete data. Of the remaining 95, 61 are male, 34 are female, and age range is from 37 to 82 years. Sixteen PALS (17%) have stopped edaravone, on average after 2.6 months of onset of treatment (range: <1 month through 6.6 months after onset of treatment). Average ALSFRS-R score of all patients on edaravone was 33.6, and of the patients that discontinued the medication was 29.8.

Enrollment has accelerated since that time and updated results, vital capacity slopes, and data for the aggregate population through March 2019 will be reported at the meeting.

 

The ALS Natural History Study Consortium provides an opportunity to participating sites to aggregate heterogeneous patient population, and to provide usage and efficacy information on concomitant medications, including post-marketing review of approved drugs as edaravone.

Authors/Disclosures
Ximena Arcila-Londono, MD (Henry Ford Hospital)
PRESENTER
Dr. Arcila-Londono has nothing to disclose.
David Walk, MD, FAAN (Dept. of Neurology) No disclosure on file
Scott Vota, DO, FAAN (Bon Secours Medical Group) No disclosure on file
Alexander Sherman (Massachusetts General Hospital) The institution of Mr. Sherman has received research support from The ALS Association. The institution of Mr. Sherman has received research support from NIH. The institution of Mr. Sherman has received research support from FDA. The institution of Mr. Sherman has received research support from Biogen. The institution of Mr. Sherman has received research support from Amylyx Pharmaceuticals. The institution of Mr. Sherman has received research support from Mitsubishi-Tanabe Pharma America. Mr. Sherman has a non-compensated relationship as a Member, Board of Directors with ALD Connect that is relevant to AAN interests or activities.
Kimberly L. Goslin, MD (Providence Medical Center) No disclosure on file
Ghazala Hayat, MBBS, FAAN (Saint Louis University) Dr. Hayat has received personal compensation in the range of $500-$4,999 for serving as a Consultant for kabafusion. Dr. Hayat has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for csl. Dr. Hayat has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for alexion. Dr. Hayat has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for MTPA. Dr. Hayat has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for alexion. Dr. Hayat has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for kabafusion.
No disclosure on file
Daniel S. Newman, MD (Henry Ford Hospital) Dr. Newman has nothing to disclose.
Kara L. Steijlen, MD (Henry Ford Hospital) Dr. Steijlen has nothing to disclose.
James P. Wymer, MD, PhD, FAAN (Department of Neurology, University of Florida) No disclosure on file
Nicholas T. Olney, MD (Providence) No disclosure on file
Megan Somers Butler, PA No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
No disclosure on file
Eric A. Macklin, PhD (Massachusetts General Hospital) The institution of Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving as a Consultant for AI Therapeutics. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Chase Therapeutics. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bial Biotech. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Stoparkinson Healthcare LLC. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Macklin has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. The institution of Dr. Macklin has received research support from Biohaven. The institution of Dr. Macklin has received research support from Clene Nanomedicine. The institution of Dr. Macklin has received research support from Mitsubishi Tanabe Pharmaceuticals America. The institution of Dr. Macklin has received research support from Prilenia. The institution of Dr. Macklin has received research support from UCB Ra Pharma. The institution of Dr. Macklin has received research support from Revalesio. The institution of Dr. Macklin has received research support from Seelos. The institution of Dr. Macklin has received research support from Calico. The institution of Dr. Macklin has received research support from Denali. The institution of Dr. Macklin has received research support from NeuroDex. The institution of Dr. Macklin has received research support from Alector. The institution of Dr. Macklin has received research support from ITB-Med.