Using the Myasthenia Gravis Patient Registry Management for Research Studies: Paul Strumph, MD

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The lead of the Myasthenia Gravis Foundation of America’s Global Myasthenia Gravis Patient Registry spoke about the registry from a research project perspective. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

“By making our registry available, we hope to make the process more efficient, and less of a burden to patients to find and participate in studies that are both done by academic institutions and pharmaceutical companies.”

Sites such as ClinicalTrials.gov are platforms that allow patients and researchers to explore information about research studies; although, as a patient interested in participating, getting in contact with the right person can be a challenge. Also, if a patient is interested in participating in multiple clinical trials and must join different registries, it could be more time consuming for them and hard to keep track of. Recently, the Myasthenia Gravis Foundation of America (MGFA) re-launched its MGFA Global MG Patient Registry to combat these challenges for patients.1

In a recent interview, Paul Strumph, MD, chief medical officer at Seraxis Pharmaceuticals, and patient with MG, sat down with NeurologyLive® to discuss the attributes of the MGFA’s patient registry from a research focused perspective. He spoke on how patients can retrieve information about research studies through the registry and it how it helps researchers identify the right patients. Strumph, lead of the MGFA Global MG Patient Registry, also talked about the registry is managed by the organization with the goal of generating research.

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 8, 2023. https://myasthenia.org/Portals/0/News_Release_MGFA_Alira_Health_Partner_Final_1-25-2023_v2_1.pdf
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