See If You Can Help Researchers by Sharing Your Myasthenia Gravis Journey
MyRealWorld® MG is an app-based research study, based on real-world evidence, designed to help advance the scientific understanding of myasthenia gravis.
By entering details on the app on your smartphone, like your general health, symptoms and daily activities, you may be able to contribute to this study. That’s why argenx partnered with MGFA and Vitaccess, a digital healthcare research company, to sponsor this new app-based study designed to help advance understanding of MG and the impact it has on someone’s daily life.
The study is the first app-based global research project focused on MG symptoms and their effects on individuals living with this condition. Through the MyRealWorld® MG app, we will gather data from people living with MG in nine different countries. Your personal information will not be revealed; it will be de-identified to protect your privacy.* Data from all participants will be combined and shared with the scientific community to inform the continuation of MG research. The aim of the study is to collect information from real patients living with MG and provide access to researchers so they may try to better understand the impact of myasthenia gravis on people’s lives.
See How You Might Help Drive MG Research Forward
Now available internationally on both Android and iOS devices, the MyRealWorld® MG app-based study is open to an adult diagnosed with myasthenia gravis. If you choose to participate, you will be able to set up a medical profile in the app where you can record information about your symptoms and treatment. The app-based study also includes questionnaires and surveys about additional diagnoses, symptoms, and other activities of your daily life.
Over a two-year period, the app-based study aims to capture more complete data on the effects of myasthenia gravis. All information is gathered, analyzed and de-identified to protect your privacy by Vitaccess, which specializes in creating real-world evidence platforms for rare disease studies. The research findings will be shared with study sponsors argenx and MGFA, as well as other patient organizations across nine countries.
Let’s help researchers understand more about how MG affects us.Nancy Law, patient living with MG
“Our ability to collect large amounts of firsthand data over a relatively short period of time could enable researchers and others in the medical community to gain a broader understanding of the illness,” said Srikanth Muppidi, MD, Clinical Associate Professor, Neurology and Neurological Sciences, Stanford Hospital and Clinics, Palo Alto, California. “The hope is that this knowledge could possibly lead to better management of MG for all patients.”
Since you will need to input your symptoms into the MyRealWorld® MG app, you may find it a helpful way to track and monitor your symptoms. The MyRealWorld® MG app may make it easier for you to support the larger myasthenia gravis community while doing something that may already be part of your routine. By participating, you may be able to help raise awareness of the illness and help bridge the communication gap that may exist between people living with MG and health care providers.
“Every person I know who’s living with MG is having a different experience with it,” said Nancy Law, a person living with MG. “Each patient’s symptoms are unique, and I think a study-based app, like MyRealWorld®, is great. I’d be glad to share my story. We may be able to help the researchers understand a lot more about how MG affects us.”
*Discover more about how your personal identity is protected in this study here.
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