Abstract
Objectives 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.
Methods The MGBase was developed based on the highly successful Multiple Sclerosis registry, MSBase. This approach leverages the existing IT infrastructure and governance structures of the MSBase registry. 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 the MGBase data entry fields and minimum data set 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 at two Melbourne tertiary centers. It is anticipated that another four national centers and several international centers will start recruiting patients within the next 6 months. Data from the first 21 patients enrolled in MGBase demonstrates a mean age of 60.1 years (62% female) with mean disease duration of 4.74 years. Five patients had a recorded exacerbation in the last 12 months. Further clinical and demographic data will be presented
Conclusion MGBase is the first observation international registry launched for patients with MG. The MGBase registry is dedicated to evaluating outcomes data in MG through collaborative international research.
