The bold concept to have a physician captured, longitudinal data base reflecting real time evidence about treatment benefits for people with Myasthenia Gravis was first presented to the Myasthenia patient group in December 2016. The Myasthenia community committed to raising $40,000 to support this work. The project was known as eNID. At the 2017 Conference Dr Katherine Buzzard, who has been at the forefront of this work, explained the concept and by end of day the target had been met! Dr Buzzard and Dr Reddel continued to progress this project and by July 2020 additional funds had been raised inclusive of a total contribution of just over $100,000 from the Australian MG Community!
That feels like such a long time ago. Much patience was asked of our community but the outcome has been worth the wait. The eNID Project became MGBase. Please read on to understand more about how our Australian Specialists have taken the lead on this international opportunity!
MAA proudly supporting MGBase!
The MGBase Registry is the first global, observational registry dedicated to evaluating outcomes data in myasthenia gravis. ‘MGBase’ was launched in December 2021, addressing a critical gap in the collection of ‘real-world’ patient data for this rare disease. Owned and operated by the MSBase Foundation, the MGBase Registry is built on the same robust governance and IT infrastructure that underpins the highly successful MSBase Registry for multiple sclerosis.
MGBase is developed for clinicians and provides them with access to a comprehensive data entry tool and an online research platform, paving the way for collaborative, international myasthenia research that aims to enhance the quality of care and improve patient outcomes. Membership is free and open to all practising neurologists treating patients with Myasthenia.
As at February 2025, the international registry contained over 1050 patients and is growing daily. Over half of the total patient cohort is being contributed by Australian MGBase centres in Victoria, Western Australia, NSW, QLD and Tasmania. 154 members (Specialists) are engaged across 12 countries and 24 clinics. The data is already contributing to research projects.
Patient registries such as MGBase are powerful instruments for expanding our knowledge of diseases. They are particularly useful in rare diseases, such as Myasthenia, where they can provide the opportunity to pool ‘real world’ data to reach a sufficient sample size for epidemiological and clinical research. If you’re interested in having your clinical data contributed, please speak to your specialist about signing up to MGBase. A dedicated membership and IT team is available to support MGBase members. Visit the website for more information www.mgbase.org, or clinicians can contact info@mgbase.org directly for more information on how to join.
