Bidirectionality of the Relaunched Myasthenia Gravis Patient Registry: Paul Strumph, MD

WATCH TIME: 3 minutes

“If the patient enters certain attributes into the registry, and there's a project of bringing together a panel of patients with those attributes, then the information can be drawn from the registry that's fully HIPAA compliant. Any information from the registry could be gathered that would be helpful to either academic researchers, healthcare providers, or pharmaceutical companies.”

Finding potential candidates for research projects may pose as a challenge for some researchers who are seeking to investigate a specific subgroup of patients for their clinical studies. Although patient registries and healthcare data systems assist with this process, there are still challenges for recruiting patients in a short amount of time. Advancements in technology have shown to be beneficial in creating a more collaborative space for clinicians and patients to have access to health information. One example is the recent relaunching of the Myasthenia Gravis Foundation of America’s patient registry for myasthenia gravis (MG).¹

Relaunching the registry capitalizes on the advances made with technology to give the opportunity to researchers to have a better understanding of the disease biology and patient experience with the disease. Patients enrolled into the registry can add their health data twice a year through a questionnaire and contribute their experiences daily using the application. The registry is a longitudinal, global, online portal of MG data that is HIPPA-compliant and shared directly to the patients.

Paul Strumph, MD, chief medical officer at Seraxis Pharmaceuticals, and patient with MG, sat down with NeurologyLive® in a recent interview to talk about additional attributes of the MGFA’s patient registry in terms of what it can do for patients and clinicians. He discussed the bidirectionality of the registry in comparison with the previous version, which allowed information to be transported from one way into the portal. Strumph, lead of the MGFA Global MG Patient Registry, also spoke on what the organization is planning on exploring regarding to assist researchers when searching for potential candidates for their 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 17, 2023. https://myasthenia.org/Portals/0/News_Release_MGFA_Alira_Health_Partner_Final_1-25-2023_v2_1.pdf