• Clinical Lead of the Eastern Health Multiple Sclerosis and Neuroimmunology Service, Dr Katherine Buzzard is co-chair of the scientific leadership group (SLG) leading an international database designed to study real-world outcomes in Myasthenia Gravis (MG) aimed at improving the quality of life for those battling the disease.
• MG is a rare chronic autoimmune disorder whereby antibodies block the signaling between nerves and muscles, resulting in muscle weakness. It affects women and men of all ages.
• MGBase is a global MG patient registry collecting longitudinal data to allow biostatisticians and clinicians to do statistical modelling and analysis to improve our knowledge of MG and to improve patient outcomes.
• The database now includes patients from 11 countries including; South Africa, Greece, Kuwait, Italy, Mexico, Turkey.
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INTERVIEW OPPORTUNITY: Neuroimmunologist Dr Katherine Buzzard is available for interview upon request. Contact Marianna Alepidis to arrange a time.
PHOTO: Available for download here.
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Neuroimmunologist Katherine Buzzard is co-chair of the scientific leadership group leading an international database aimed at building knowledge for Myasthenia Gravis and improving the quality of life for those battling the disease.
Myasthenia Gravis is a rare chronic autoimmune disorder affecting around 1 in 10,000 people. The disease is caused by antibodies that block the signaling between nerves to muscles, resulting in weakness of the muscles. It affects women and men of all ages.
“MG causes a type of weakness that we refer to as fatigable weakness, which means the more you use the muscle, the weaker it gets. For some people, it only ever affects the eye muscles, resulting in double vision or drooping eyelids.
“For other people, they get what we call generalised Myasthenia, where other muscles are affected including neck muscles; so they can't hold their head up. It can affect the muscles of swallowing, chewing, speaking, breathing, arms and legs. It can be absolutely debilitating, and really impact someone’s quality of life,” Dr Buzzard said.
The MGBase Registry was officially launched in October 2021 after Dr Buzzard was inspired by the work done in the Multiple Sclerosis (MS) field.
“I had some experience working with Multiple Sclerosis (MS) patients with a big international MS registry called MSBase. As a junior doctor, I really got the opportunity to see how useful large, well-built registries are in terms of providing care to patients.
“I had this idea that we needed to build an international registry for patients with other autoimmune diseases such as Myasthenia with the knowledge that international, well-built registries, can be incredibly powerful tools for expanding our knowledge of rare diseases and their treatments,” Dr Buzzard said.
With the support and infrastructure of the independent MSBase Foundation, a not-for-profit company located at the School of Translational Medicine, Monash University, together with valuable support from the Myasthenia Alliance Australia, the Australian peak body representing MG patients and their carers, MGBase was born.
The MGBase Registry is a data repository that allows biostatisticians and clinicians to perform statistical modelling and analysis. It includes anonymized patient demographics, diagnostic information, ancillary investigations, treatment data, complications and safety data.
Currently MGBase holds data from 852 patients across 11 countries around the world. Dr Buzzard and her team are hoping to reach 1000 patients by the end of the year. While there are country and region-specific MG registries elsewhere in the world, MGBase represents the first truly global MG registry.
“Some of the most important data are the disease outcome measures. By using these very structured outcome measures consistently with all patients, you end up being able to use those outcomes for statistical analyses.
“Due to the rarity of the disease, clinicians who look after these patients often have to rely on case reports or small case series to understand how to treat these patients as there are very few if any randomized controlled clinical trials to help guide treatment decisions. And these are patients who are often diagnosed with a chronic disease at a young age. They have a lifetime of potential disability ahead.
“Now we have enough data in MGBase where we can start doing the research. We are currently looking at a variety of outcomes including comparing early versus late onset disease, and seeing whether there are biomarkers to help predict outcomes. We want to know if there is something that will help us predict what's going to happen down the track because the uncertainty is one of the most challenging things when dealing with this disease,” Dr Buzzard said.
Contact details:
Marianna Alepidis
Media Officer
marianthe.alepidis@easternhealth.org.au
0437 875 825
