Abstract Details

Title COVID-19 Amyotrophic Lateral Sclerosis (ALS) Registry NCT04559009

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P3 - Poster Session 3 (5:30 PM-6:30 PM)

Poster/Presentation
Number 11-007

Background

This observational registry is aimed to assess the impact of COVID-19 on ALS disease trajectory to help guide future directions of care, especially the role of COVID-19 on respiratory compromise and corroborate other demographic features.

Objective

To capture the impact of COVID-19 on ALS by creating a patient-facing observational registry.

Design/Methods

ALS patients, and/or caregivers invited to report demographics, COVID-19 diagnosis and treatment details via a secure registry questionnaire through a REDCap Database. Patients are recruited by open announcement/email invitations via Center for Disease Control (CDC), National ALS Registry, ALS Association (national), ALS patient support organizations, Letter to MDA, ALSA and Northeast ALS Consortium Centers as well as ClinicalTrials.gov.

Results

Registered ALS patients with documented COVID-19 infection [14] completed the survey to date: 9 – males; 5- females. All participants were Caucasian. Mean BMI was 26.31. 62.5% had no history of tobacco use. Concomitant ALS medications included: riluzole - 60%, edaravone -13.3%, dextromethorphan/quinidine -13.3%, no medications - 33.3 %. COVID-19 infection interrupted clinical trial participation - 20.0%. COVID-19 infection was treated at home in 73.3% while 26.7% were hospitalized. 13.3% were on NIV while 86.7% were not. Concomitant COVID-19 medications included Remdesivir - 14.3%, Azithromycin - 21.4%,, Corticosteroids 28.6%, no COVID-19 directed therapies - 57.1%. All of the 26.7 % hospitalized patients were discharged home. Pre COVID-19 total ALSFRS R scores (28 to 47) changed minimally during COVID-19 (27 to 47).

Conclusions

In this COVID 19 ALS Registry participants to date, there were no COVID-19 related deaths in all Caucasian, predominately riluzole treated cohort and all have returned to home care with no significant change in ALSFRS R Scores post COVID. Further recruitment is ongoing to enrich COVID-19 infected ALS patients on wider range of ALS modifying therapies and expanding spectrum of COVID-19 modifying therapies from different periods of this ongoing pandemic to define in more detail their experience.

Authors/Disclosures
Urvi G. Desai, MD, FAAN (Dept of Neurology, CMC) PRESENTER	Dr. Desai has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Desai 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. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Takeda. Dr. Desai has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Fulcrum. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Catalyst. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. Dr. Desai has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Argenx.
Benjamin R. Brooks, MD, FAAN (Clinical Trials Planning LLC)	Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Mitsubishi Tanabe Pharma America. Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Medicinova. Dr. Brooks has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for AB Science. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ionis. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Mitsubishi Tanabe Pharma America. Dr. Brooks has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Muscular Dystrophy Association. The institution of Dr. Brooks has received research support from Mitsubishi TanabePharma America. Dr. Brooks has received personal compensation in the range of $0-$499 for serving as a Member Annual Surveillance Committee CDC National ALS Registry with Center for Disease Control Agency Toxic Substances Disease Registry. Dr. Brooks has a non-compensated relationship as a Member ALS Quality Measures Subcommittee with American Academy of Neurology that is relevant to AAN interests or activities.