App-based MyRealWorld MG Study Seeks Patient Insights

App-based MyRealWorld MG Study Seeks Patient Insights
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Argenx is looking for participants in an app-based international study of the impact and burden of myasthenia gravis (MG) on patients and their families.

The company has released an app called MyRealWorld MG to gather information about individuals’ diagnosis, complications, treatments, activities, and quality of life, using a set of questionnaires and surveys.

Available on iPhones and Android devices, the app prompts users to create a personal medical profile to help them monitor their well-being, treatments and healthcare visits, as well as facilitating discussions with their physician.

The study, sponsored by Argenx and conducted in collaboration with patient organizations from the U.S., Japan, Germany, U.K., France, Italy, Spain, Canada, and Belgium, has been approved by an institutional review board in each country. It intends to include up to 2,000 participants and is open to all MG patients 18 or older.

Anyone with the app may choose to share aspects of their information with friends, family, other study participants and with healthcare professionals. Argenx notes, however, that each patient’s information is combined with that of the others and that identities are not revealed, in accordance with the European Union General Data Protection Regulation.

The company co-created MyRealWorld MG with patients, patient advocacy groups, and clinical experts. Development included regular patient feedback and testing sessions focused on improving user experience. Other features may be added in the future.

MG occurs when the immune system mistakenly attacks healthy muscle cells. Specifically, a type of antibody called immunoglobulin G (IgG) target proteins at the neuromuscular junction, which is the site where nerve endings communicate with muscles. Most often, such antibodies target the acetylcholine receptor (AChR), impairing muscle contraction.

Argenx is developing efgartigimod, an antibody fragment designed to treat generalized myasthenia gravis by lowering IgG levels in the body. The investigational therapy successfully completed Phase 3 clinical trial testing and Argenx now is planning to submit a biologics license application to the U.S. Food and Drug Administration seeking approval of efgartigimod.

The company also recently launched an online platform called MG United, which publishes articles addressing the needs of people with MG and personal stories from members of the community. It will host the first-ever documentary miniseries on MG, called “A Mystery to Me,” which premieres Nov. 17.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
Total Posts: 32
José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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