Significance of Relaunched Patient Registry for Myasthenia Gravis Research: Richard Nowak, MD, MS

WATCH TIME: 3 minutes

“We believe that patients are partners in research. Patients and individuals with myasthenia gravis should be actively engaged in the research process and this is something that patients can do proactively to participate in research.”

In the United States, myasthenia gravis (MG) affects approximately 70,000 patients, causing symptoms of muscle weakness, double vision, and difficulty chewing, breathing, swallowing, and speaking.¹ The participation from patients with the disease has led to an increase in approved treatments to reduce symptoms of the disease.

Recently, the Myasthenia Gravis Foundation of America (MGFA) partnered with Alira Health to re-launch its MGFA Global MG Patient Registry. The registry allows patients with MG to submit their health data in a secure portal, thus facilitating research to gain more knowledge on the disease, improve patient outcomes, and possibly explore more effective treatments for MG.¹

Richard Nowak, MD, MS, assistant professor of neurology, Yale School of Medicine, sat down with NeurologyLive^® in an interview to talk about the relaunch of MGFA’s patient registry. Nowak, who also serves as MGFA’s chief medical advisor, spoke about the implications and the significance of research with using the registry to recruit patients in clinical trials.

REFERENCES
1. Myasthenia Gravis Foundation of America (MGFA) Re-launches the MGFA Global MG Patient Registry with Partner Alira Health. News release. Myasthenia Gravis Foundation of America. Published January 25, 2023. Accessed February 2, 2023. https://myasthenia.org/Portals/0/News_Release_MGFA_Alira_Health_Partner_Final_1-25-2023_v2_1.pdf