The MGFA Global MG Patient Registry: Powered by Health Storylines
Myasthenia gravis (MG) is an ultra-rare disease, making the involvement of patients in research challenging. The MGFA Registry offers a way for patients to share their experience with MG and impact of the disease on their quality of life to contribute to improvements in care and discovery of new treatments.
Introducing the MGFA Global MG Patient Registry 2.0 Myasthenia Gravis Foundation (MGFA) in partnership with Alira Health’s flagship patient health platform, Health Storylines™, provides a registry that enables patients to directly help organizations make new MG discoveries that could lead to better treatments and improve patients’ quality of life.
What’s New? Patients Reported Insights
The MGFA Registry enables patients to submit their health and symptom data to be securely used to design and drive new research studies and clinical trials to find better treatments and a cure for MG.
If you are a patient and would like to join the registry, please join here. By participating in the registry, you will not only be able to contribute valuable information to the medical and research community, but you will have access to a large library of health-tracking tools through the Health Storylines registry app.
Unlock the Power of Real-World Insights
Relying solely on medical examinations misses a range of challenges that patients are more likely to report on a day-to-day basis. Real-world insights into people with MG can strengthen disease understanding in the product life cycle and create impact in treatment and routine care. Leveraging a patient-enabled registry, life sciences companies get:
- A more complete view of the burden of living with MG
- Data about fluctuating symptoms not always captured in a medical examination
- A complete picture on how MG limits an individuals’ daily activities and the consequences of these limitations
A Committed Partnership, A Deep Understanding of MG
MGFA and Alira Health share a vision where patients drive healthcare.
Why Consider the MGFA Global Registry
MGFA is the largest global patient advocacy association for MG, with an unparalleled understanding of and network for the myasthenia gravis community.MG. 3,500 patients are enrolled in the registry today – and its rapidly growing.
About the Partners
The Myasthenia Gravis Foundation of America (MGFA) is the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of those living with MG.
Alira Health is a global advisory and clinical research firm whose mission is to humanize healthcare and life sciences, in partnership with patients, through innovative technologies and expert guidance.
Health Storylines is Alira Health’s patient-driven digital operating system for care and research that patients, patient advocacy groups, patient associations, MedTech, Biotech, Pharma, and manufacturers trust to engage in decentralized clinical trials (DCT), Real-World Evidence (RWE) generation, and patient support programs.