Myasthenia Gravis Foundation of America (MGFA) Re-launches the MGFA Global MG Patient Registry with Partner Alira Health
Patients living with myasthenia gravis (MG) provide their health and symptom experience data in a safe, secure registry to drive new research and discoveries for improved disease understanding, better patient outcomes and treatments.
BOSTON, Jan. 25, 2023 /PRNewswire/ -- The Myasthenia Gravis Foundation of America (MGFA™), the largest, leading patient advocacy organization solely dedicated to the myasthenia gravis (MG) community re-launched its MGFA Global MG Patient Registry in partnership with Alira Health. The MGFA registry enables MG patients to safely, securely, and confidentially contribute their health and symptom data to help researchers design and drive research studies and clinical trials for making MG discoveries and finding better treatments to improve MG patient outcomes.
Alira Health has provided new, more efficient methods for patients to submit their data via a mobile phone application called Health Storylines™, as well as analytical support to unlock insights from the registry. The re-launch of the registry capitalizes on technological advances and better understanding of MG. Patients will add their data to the structured registry questionnaire twice a year, while also having the opportunity to contribute their day-to-day health experience data using the app, so that researchers can benefit from a deeper understanding of the lived experience of patients with MG.
"It is critical for researchers and clinicians to have access to real, up-to-date patient data to help design and build research studies and trials to more accurately prove out hypotheses and objectives," said Samantha Masterson, president and chief executive officer of the MGFA. "Patients from around the world require data privacy, and now they can safely and securely share their data to help research sponsors make MG discoveries that could lead to better outcomes and treatments. Patient contributions to the registry will help drive new and better ways to treat MG."
"We see a future where patients are empowered to carry their own end-to-end health care information to obtain more effective treatments, better manage a disease, be healthier, or actively equip their circle of care to assist them," said Gabriele Brambilla, chief executive officer of Alira Health. "MGFA Global MG Patient Registry is an important step on this path. We are honored to partner with them to help improve the lives of patients with myasthenia gravis."
This patient registry captures longitudinal data on MG patient experiences, shared directly by patients with best-in-class privacy and security compliance. The MGFA registry is a powerful, real-world data source that will enable research and clinical trials with access to recruitment and direct patient insights. Research leveraging the registry will be shared with participants, so that they stay actively involved throughout the process and see how their contribution of data benefits the community.
MG patients can join the registry by using the following link to access and establish an account page.
https://www.mgregistry.org/
About Alira Health
Alira Health is an international patient-centric and technology-enabled advisory firm whose mission is to humanize healthcare.
About MGFA
The Myasthenia Gravis Foundation of America (MGFA) is the largest, leading patient advocacy organization dedicated to improving treatments for myasthenia gravis (MG) by funding research discoveries and providing patient-centric programs, materials, guidance, events, and webinars to connect, educate, and assist members of the global MG Community.
MGFA Contact Information:
Michael Antonellis
Vice President, Global Marketing & Communications
[email protected]
+1-617-610-2411
Kate Stober
National Director, Digital and Content Marketing
[email protected]
+1-480-744-2705
Alira Health Contact Information:
Susan Irving
Vice President of Global Marketing
[email protected]
+1-617-794-3478
SOURCE Myasthenia Gravis Foundation of America, Inc.
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