MGBase: The launch of an international electronic database for patients with Myasthenia Gravis
Stephen Reddel1, Carolina Barnett Tapia2, Helmut Butzkueven3, Katherine Buzzard4, Gary Cutter5, Henry Kaminski6, Anneke Van Der Walt7, wen wen zhang8
1Sydney Neurology, 2University of Toronto, 3Monash Health, 4Eastern Health, Dept Neuroscience, 5University of Alabama At Birmingham, 6George Washington University, 7Melbourne Health, 8Department of Neurology, Alfred Health
Objective:
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.
Background:
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.
Design/Methods:
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.
Results:
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.
Conclusions:
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.