Advancing Research in Myasthenia Gravis With Clinician-Patient Partnership: Richard Nowak, MD, MS

WATCH TIME: 4 minutes

“I think that all our patients are partners, in their own care and partners in research. Without them, we can't do any clinical research, and we can't advance the field.”

In the clinical community between clinicians and patients, there is a shared process in providing data and working towards new treatments. The partnership between both is important in that it helps patients adhere to treatment and allows clinicians to have a better perspective of the disease. It is essentially critical in diseases such as myasthenia gravis (MG), a patient population that has a prevalence of approximately 14-40 per 100,000, for there to be a working partnership with clinicians and patients to continue research in efforts for improved care outcomes.

In recent news, the Myasthenia Gravis Foundation of America (MGFA) re-launched its MGFA Global MG Patient Registry which allows patients with MG to submit their health data online. The registry is a secure portal for researchers to not only have a better understanding of the disease biology, but also to use the data for new studies to improve patient outcomes, and potentially for the development of new treatments for MG.¹

Recently, Richard Nowak, MD, MS, assistant professor of neurology, Yale School of Medicine, sat down with NeurologyLive® in an interview to discuss the partnership between patients and clinicians in relation to the relaunch of MGFA’s patient registry. In addition, he spoke on the measures that are collected in the registry that allow clinicians and researchers to find the best candidates for their studies. Nowak, MGFA’s chief medical advisor, also mentioned some of the knowledge gaps in MG care and the stakeholders that help to advance the field in the efforts of drug development.

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 16, 2023. https://myasthenia.org/Portals/0/News_Release_MGFA_Alira_Health_Partner_Final_1-25-2023_v2_1.pdf