Join the MGFA Global MG Patient Registry

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Submit Your MG Patient Data to Help Researchers Find Better Treatments for Myasthenia Gravis

Myasthenia gravis (MG) is a rare condition that affects about ~0.002% of people in the US. With MG being a rare disease, not enough is known about the impact of myasthenia gravis on patients, or about effective treatment options.

MGFA is dedicated to their mission to help enable new treatments for myasthenia gravis and

create a world without MG.

Why Participate in the Registry?

A patient registry is a collection of information about a group of patients who share a condition or experience, and represents an important way for patients to share their experience and perspective about their disease with the medical community to improve care, treatment and research.

MG patients from around the world can privately, safely, and securely enter their data which is protected as part of a HIPPA-compliant secure database.

Real, up-to-date patient data is critical for clinicians and researchers in the assessment of disease course, use of various therapies, and estimation of disease costs. In addition, the registry data provides an opportunity for MG researchers to gauge the potential for trial recruitment and to communicate with patients directly about potential research investigations.

How Can Participation in the Registry

Benefit Me?

The registry is live and we 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! Click the button below to get started now.

You Have Two Options to Join and Enter Data:

Option #1: Visit the Online Registration Form and Survey using the Button below. We provide an online method – an easy-to-use webpage – to add patient data from your laptop, PC, or tablet.

Option #2: Download the New Health Storylines Mobile App from Alira Health. Download this mobile app from the Apple or Google platform to enter data from anywhere using your phone.

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.

Developed by Alira Health in partnership with the

Myasthenia Gravis Foundation of America