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Abstract Details

MGBase: The launch of an international electronic database for patients with Myasthenia Gravis
Neuromuscular and Clinical Neurophysiology (EMG)
P7 - Poster Session 7 (8:00 AM-9:00 AM)
10-014

To develop and implement the first international observational database for patients with Myasthenia Gravis (MG) to advance collaborative outcome-based MG research and improve the quality of care for patients with MG.
There is no currently available and globally accessible MG database for real world outcomes research. While multiple therapies are used or are in trial for MG, longitudinal outcome data including physician reported, patient reported and safety outcomes are limited.

The MGBase was developed from the highly successful Multiple Sclerosis registry, MSBase with >80,000 patients, and in collaboration with and the support of the MSBase Foundation. This approach leverages the existing IT infrastructure, data security, privacy compliance and governance structures of the MSBase registry. A minimum data set and extended options enable data quality.

Designed to be used during regular outpatient consultations, MGBase provides a longitudinal graphical display of the patient disease course, therapies and outcomes. The development of MGBase data entry fields and minimum dataset was guided by an MG special interest group comprising national and international MG experts. Members of this group have subsequently formed the MGBase scientific leadership group responsible for determining the overall direction and scope of the MGBase registry.  
MGBase was launched in December 2021 with the first patients recruited in Australian pilot centers. Data to 01-AUG-2022 of 53 patients enrolled in MGBase demonstrates a mean age of 59 years (67% male) with mean disease duration of 9.7 years. Disease subtype was AChR += 29, MuSK +=3, seronegative = 14, unknown =3. Yearly outcomes, longitudinal treatment and safety outcomes data are available. 
MGBase is the first observation international registry launched for patients with MG. The MGBase registry is dedicated to evaluating outcomes data in MG and making this available for scientific and health outcomes research within an international collaboration. 
Authors/Disclosures
Stephen Reddel, MBBS, PhD, FRACP
PRESENTER 		Dr. Reddel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Reddel has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for argenx. Dr. Reddel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for novartis.
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.
Helmut Butzkueven, MD, MBBS Dr. Butzkueven has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Oxford Health Policy Forum. The institution of Dr. Butzkueven has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. The institution of Dr. Butzkueven has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Merck. The institution of Dr. Butzkueven has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Novartis. The institution of Dr. Butzkueven has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Roche. Dr. Butzkueven has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for MSBase . The institution of Dr. Butzkueven has received research support from NHMRC. The institution of Dr. Butzkueven has received research support from Biogen. The institution of Dr. Butzkueven has received research support from Roche. The institution of Dr. Butzkueven has received research support from Novartis.
Katherine Buzzard, MBBS, PhD, FRACP (Eastern Health, Dept Neuroscience) Dr. Buzzard has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Buzzard has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Biogen. Dr. Buzzard has received personal compensation in the range of $5,000-$9,999 for serving as a support to attend educational conference with Roche.
Gary R. Cutter, PhD (University of Alabama At Birmingham) Dr. Cutter has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for onsulting or Advisory Boards: Alexion, Antisense Therapeutics/Percheron, Avotres, Biogen, Clene Nanomedicine, Clinical Trial Solutions LLC, Endra Life Sciences, Cognito Therapeutics, Genzyme, Genentech, Immunic, Klein-Buendel Incorporated, Kyverna Therapeutics, Inc. , Linical, Merck/Serono, Noema, Neurogenesis, Perception Neurosciences, Protalix Biotherapeutics, Regeneron, Revelstone Consulting, Roche, SAB Biotherapeutics, Sapience Therapeutics, Scott&Scott LLP, Tenmile.. Dr. Cutter has received personal compensation in the range of $50,000-$99,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Data and Safety Monitoring Boards: Applied Therapeutics, AI therapeutics, AMO Pharma, Argenx, Astra-Zeneca, Avexis Pharmaceuticals, Bristol Meyers Squibb, CSL Behring, Cynata Therapeutics, DiamedicaTherapeutics, Horizon Pharmaceuticals, Immunic, Inhibrix, Karuna Therapeutics, Kezar Life Sciences, Medtronic, Merck, Meiji Seika Pharma, Mitsubishi Tanabe Pharma Holdings, Prothena Biosciences, Novartis, Pipeline Therapeutics (Contineum), Regeneron, Sanofi-Aventis, Teva Pharmaceuticals, United BioSource LLC, University of Texas Southwestern.. Dr. Cutter has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for JASN.
Henry J. Kaminski, MD, FAAN (George Washington University) Dr. Kaminski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Kaminski has received personal compensation in the range of $0-$499 for serving as a Consultant for Cabaletta Bio. The institution of Dr. Kaminski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Merck. Dr. Kaminski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Canopy Immunotherapeutics. Dr. Kaminski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Curie.bio. Dr. Kaminski has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Samsung. Dr. Kaminski has received personal compensation in the range of $0-$499 for serving as a Consultant for Care Constitution. Dr. Kaminski has stock in mimivax. The institution of Dr. Kaminski has received research support from National Institutes of Health. Dr. Kaminski has received publishing royalties from a publication relating to health care.
Anneke Van Der Walt, MD (Alfred Health) Dr. Van Der Walt has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merck. Dr. Van Der Walt 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. Van Der Walt 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. Van Der Walt has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Novartis. Dr. Van Der Walt has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Biogen. The institution of Dr. Van Der Walt has received research support from NHMRC Australia. The institution of Dr. Van Der Walt has received research support from MSRA. The institution of Dr. Van Der Walt has received research support from Roche.
Wenwen Zhang, MD, PhD (Alfred Hospital) Dr. Zhang has nothing to disclose.