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Submit Your MG Patient Data to Help Find Better Treatments for Myasthenia Gravis
There are many unknowns and questions about MG and we do not have enough information about the disease to close those gaps. But one way to find answers is through research that uses patient-reported data in the MGFA Global MG Patient Registry to discover and support treatments that could greatly improve your life.
If you are currently enrolled in the MG Registry, enter your health information in the questionnaire survey through the button below or go to MGRegistry.org.
Go to MGRegistry.org
Learn more about the benefits of enrolling in the registry below!
Why Participate in the Registry?
Because it could get us closer to a world without MG. When you enroll in the MGFA Global MG Patient Registry, you now have a loud voice – you will be empowered by directly helping the MG Community.
Patient reported data is the most valuable perspective on the disease and will help researchers discover new treatments and ways to manage MG.
MG patients are the real experts of our disease. We understand how MG impacts our bodies more than anyone else. Sometimes we feel ignored or not heard by those around us, but by adding our data to the registry, we are helping guide new research and discoveries that could change the course of MG in the near future.
What is the MGFA Global Registry?
The registry is a longitudinal, ongoing study that is truly inclusive and open to seronegative, ACHR+, LRP4+, and MUSK+ mg patients with ocular and generalized mg. Any MG patient over 18 years of age can participate, so it will not exclude certain patients like other research studies.
It is also one of the largest collection of myasthenia gravis patient data and information, and represents an important way for patients to share their experience and perspective about their disease with the medical community. MG patients from around the world can privately, safely, confidentially, and securely enter their data which is protected as part of a HIPPA-compliant secure database.
How Can Participation in the Registry Benefit Me?
MGFA collaborated with our development partner, Alira Health, to ensure patients have easier, more efficient options to add data to the registry.
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. The registry collects data through standardized surveys every 6 months, as well as through the more frequent use of the health tools within Health Storylines.
You can take advantage of these tools to manage your MG all year round by tracking your medication, symptoms, mood, and more. You will have full access to your health data in the form of reports that you can use to help you make informed decisions about your health. The registry data made available to researchers is always anonymous and aggregated so no one can attribute your data directly to you.
Join the Global MG Patient Registry
If you have myasthenia gravis and would like to participate, all you have to do is download the Global MG Patient Registry app: Health Storylines. Once you’ve signed up, complete the enrolment survey to secure your spot!
Go to MGRegistry.org to enroll or enter your MG patient data
Go to MGRegistry.org
Need More Information?
If have any questions about the Global MG Patient Registry, please email the MGFA team at the following email address: mgfa@myasthenia.org and a representative will get back to you promptly.