MGBase was presented in poster format at the Myasthenia Gravis Foundation of America 15th International Conference held in The Hague in 2025
Introduction
Patient registries are valuable tools for outcomes research in rare diseases such as myasthenia gravis (MG). Existing MG registries are limited by factors such as a lack of geographical scope. The task force on MG study design of the medical scientific advisory board of the Myasthenia Gravis Foundation of America recommended the development of an independent, ideally multinational registry.
MGBase has been designed as a global, clinician entered, observational registry aimed at studying clinical practice outcomes in MG.
Methods
MGBase has been developed with the support and infrastructure of the independent MSBase Foundation. The MGBase and MSBase registries are owned and operated by the MSBase Foundation Ltd, a not-for-profit company registered in Australia. An international scientific leadership group (SLG) established a minimum dataset and outcome measures. The MGBase SLG is responsible for determining the overall direction and scope of the MGBase registry.
Applications for data can be made by any investigator. Applications for aggregate data with statistical analysis in-house by the MSBase foundation can be made by institutions including industry.
MGBase is designed for easy and fast use in the clinic by clinicians, rather than primarily as a post-hoc data entry database. It includes a graphical user display of key aspects of the patient’s course.
Ethics, Data, Security
The MGBase registry requires ethics approval or exemption by each participating centre’s institutional review board. Patient enrolment requires a signed Participant Informed Consent form.
Deidentified and encrypted data from MDS is regularly automatically uploaded to the MGBase registry. The Registry data is hosted in Microsoft Azure (Redmond, Washington) using multi-layered, built-in security controls.
Fields
The primary outcome measure for MGBase is the Myasthenia Gravis Composite (MGC), which includes clinician and patient reported components. Yearly MGC and MGADL are included in the minimum dataset. All commonly used MG diagnostic categories, investigations, outcome measures (QMG, MGFA& PIS, MGII, MGQOL15R), thymectomy fields, and medications are included. Fields are available for exacerbations, hospitalisation, pregnancy, associated diseases and adverse events. The recording of associated diseases and adverse events is harmonised to MedDRA.
Results
As of 27th February, 2025, MGBase had 35 Centres registered with 1084 patients in the registry. This includes sites in North America, Europe, Africa, Middle East, Asia and Australia.
As of 1st Jan 2025, N=1004, the means of included patients was 56y, 54% female, 8.7y since symptom onset, 7.5y since diagnosis, 69% AChR+ Ab subtype, 719 had confirmed GMG.
As an examples of the data density in MGBase, the mean prednisolone exposure was 1070 days for the whole cohort.
Conclusion
MGBase has been developed as a globally inclusive, observational registry for collaborative research in MG. The current trajectory of increasing enrolments across a broad geographical distribution is highly encouraging. MGBase provides a unique opportunity to study global variations in MG disease characteristics and management, comparative treatment effectiveness and long-term drug safety. The MGBase registry is open to all clinicians providing care to MG patients.
