Abstract Details

Title Tracking Daily Impact of Generalized Myasthenia Gravis Using Smartphone-Based Digital Biomarkers: Lessons Learned from a 1-Year Study with ME&MGopen

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P9 - Poster Session 9 (11:45 AM-12:45 PM)

Poster/Presentation
Number 11-030

Objective To describe longitudinal real-world adherence, digital biomarkers and satisfaction outcomes collected using the ME&MGopen^TM app in patients with generalized myasthenia gravis (gMG).

Background Anti-acetylcholine receptor antibody-positive (AChR-Ab+) gMG is a rare neuromuscular condition characterized by fluctuating muscle weakness. Digital technologies offer a promising solution to track the daily impact of gMG. New strategies to optimize patient engagement, along with additional data to better characterize the clinical relevance of these novel digital tools, are needed.

Design/Methods ME&MGopen is a decentralized clinical study (USA, Canada) in adults with AChR-Ab+ gMG. Participants were followed for 1-year using ME&MGopen^TM, a smartphone-based research tool that collects digital biomarkers through active tests (ptosis, dysarthria, respiratory capacity, upper and lower limb muscle function) and patient-reported outcomes via e-Questionnaires (Patient Health Questionnaire-8, Pain Likert scale, Insomnia Severity Index, revised Myasthenia Gravis Quality of Life Scale (MG-QOL-15r)).

Results

Of 168 participants, 125 completed all scheduled activities and were analyzed. Baseline characteristics showed 70% females, mean age 59±16. There was a marked difference in disease onset with females being younger at first symptom appearance. Patients with a higher MGFA disease class and/or patients unable to work reported higher MG-QOL-15r and MG Activities of Daily Living (MG-ADL) scores, than patients with less severe disease. Disease severity, as measured by MG-ADL, was significantly associated with increased sleep disturbances, and chronic pain (p<0.001). Digital biomarkers are under analysis. Immediate engagement was high, with 93% completed digital tests at baseline, and adherence rate sustained above 65% after 1 year. ME&MGopen™ achieved an excellent usability score of 84/100 (System Usability Scale) after one month which remained stable throughout the study duration, indicating high user satisfaction.

Conclusions Preliminary results highlight the clinical value of ME&MGopen^TM in tracking the daily impact of gMG symptoms. Findings indicate both long-term adherence and satisfaction with this tool, supporting its potential use in clinical care.

Authors/Disclosures
Loic Carment (Ad Scientiam) PRESENTER	Loic Carment has received personal compensation for serving as an employee of Ad Scientiam.
Carolina Barnett Tapia, MD	Dr. Barnett Tapia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Janssen. Dr. Barnett Tapia has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NMD pharma. Dr. Barnett Tapia 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. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for argenx. Dr. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen. Dr. Barnett Tapia 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. Barnett Tapia has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for argenx. The institution of Dr. Barnett Tapia has received research support from Department of defense. The institution of Dr. Barnett Tapia has received research support from Muscular dystrophy canada. The institution of Dr. Barnett Tapia has received research support from MgNet. The institution of Dr. Barnett Tapia has received research support from NIH. The institution of Dr. Barnett Tapia has received research support from Cartesian. The institution of Dr. Barnett Tapia has received research support from Alexion. Dr. Barnett Tapia has received intellectual property interests from a discovery or technology relating to health care.
Sophie Lehnerer	Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for argenx. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for argenx. Sophie Lehnerer has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Hormosan.
Clarissa Gorin, Other (Ad Scientiam)	Dr. Gorin has received personal compensation for serving as an employee of Ad Scientiam.
Dellini Ravindra (Ad Scientiam)	Dellini Ravindra has received personal compensation for serving as an employee of Ad Scientiam.
Noura Sellami	Miss Sellami has nothing to disclose.
Bhaskar Dutta, PhD (Alexion)	Dr. Dutta has received personal compensation for serving as an employee of AstraZeneca. An immediate family member of Dr. Dutta has received personal compensation for serving as an employee of Sanofi.
Saad Zinai	Saad Zinai has received personal compensation for serving as an employee of AD Scientiam. Saad Zinai has stock in Ad Scientiam.
James F. Howard, Jr., MD, FAAN (The University of North Carolina, Dept of Neurology, CB 7025)	Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for argenx . Dr. Howard has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Regeneron Pharmaceuticals. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion Pharmaceuticals. Dr. Howard has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for AMGEN (Horizon Therapeutics). Dr. Howard 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. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biohaven Ltd. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for CorEvitas. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck EMD Serono. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cartesian Therapeutics. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NMD Pharma. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for H. Lundbeck A/S. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Seismic Therapeutics. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB Pharma. Dr. Howard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Vor Biopharma. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Academic CME. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for PeerView CME. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Platform Q CME. Dr. Howard has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for MJH LifeSci. Dr. Howard has or had stock in Johnson & Johnson dividends.Dr. Howard has or had stock in Pfizer dividends. An immediate family member of Dr. Howard has or had stock in GlaxoSmithKline dividends.Dr. Howard has or had stock in Bristol Myer Squbb dividends.Dr. Howard has or had stock in AbbieVie Inc. The institution of Dr. Howard has received research support from Alexion Pharmaceuticals. The institution of Dr. Howard has received research support from argenx . The institution of Dr. Howard has received research support from UCB Biosciences. The institution of Dr. Howard has received research support from NIH. The institution of Dr. Howard has received research support from Centers for Disease Control/Research Triangle Institute. The institution of Dr. Howard has received research support from Cartestian Therapeutics. The institution of Dr. Howard has received research support from NMD Pharma. The institution of Dr. Howard has received research support from Ad Scientiam. The institution of Dr. Howard has received research support from Merck EMD Serono. Dr. Howard has a non-compensated relationship as a Scientific Advisiory Board member, Committee member with Myasthenia Gravis Foundation of America that is relevant to AAN interests or activities. Dr. Howard has a non-compensated relationship as a Committee member with American Assoc Neuromuscular and Electrodiagnostic Medicine that is relevant to AAN interests or activities.

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