FAQs

MG is a rare condition, and there is still much to learn about how it affects people over time and how treatments work outside clinical trials.
By bringing together information from people living with MG, the registry can help researchers:

• understand how MG symptoms and quality of life change over time
• learn about patients’ experiences with different treatments
• better understand fatigue, daily activities, and quality of life
• identify unmet needs in MG care
• support the development of future treatments and better care strategies

Your experience matters and sharing it can help shape the future of MG research.

The registry is sponsored by Vitaccess, a patient-centered research organization that specializes in real-world health research.
The project is conducted in partnership with the Myasthenia Gravis Foundation of America and is guided by an independent Scientific Advisory Board that includes clinicians and patient representatives.
This ensures the registry is conducted with strong scientific standards and always with the interests of patients in mind.

You may be able to take part if:

• You are 18 years or older
• You have a confirmed diagnosis of myasthenia gravis
• You live in the United States
• You have access to a smartphone, tablet, or computer
• You are able to provide informed consent

You cannot join while actively participating in a clinical trial, but you may be able to take part once the trial has ended.

If you are interested in participating, you can register your interest here
If you are eligible:

1. You will receive your unique login details for the registry platform.
2. You will review information about the study and provide informed consent.
3. Once registered, you can begin completing surveys about your MG and your experiences living with the condition.

Support is available if you need help with the registration process.

You will be asked to complete short surveys about their MG and how it affects their daily life.
Most surveys take around 15 minutes or less per month to complete.
These surveys include questions about:

• MG symptoms
• fatigue
• daily activities
• treatments
• quality of life

You may also choose to receive short SMS check-ins asking whether your symptoms have changed.

You may be asked to share information such as:

• basic demographic information
• details about their MG diagnosis
• symptoms and disease experience
• treatments and medications
• fatigue and daily functioning
• quality of life

Some information is collected when you first join, and additional surveys are shared over time.
With your permission, certain information from your medical records, such as treatment history, may also be included to help researchers better understand MG.

You may be asked to share information such as:

• basic demographic information
• details about their MG diagnosis
• symptoms and disease experience
• treatments and medications
• fatigue and daily functioning
• quality of life

Some information is collected when you first join, and additional surveys are shared over time.
With your permission, certain information from your medical records, such as treatment history, may also be included to help researchers better understand MG.

Yes. Protecting your privacy is extremely important.
Your personal information is stored securely and handled in accordance with applicable data protection laws, including the General Data Protection Regulation (GDPR) where applicable.
Researchers who use the registry data will only have access to de-identified information, meaning they cannot see details that would identify you personally.
If medical record data is included, it is collected through secure systems that follow strict security and privacy standards.
See our Privacy Policy for more information.

Yes.
As a thank-you for your time, participants receive a $4 Amazon voucher for each survey completed.

Yes. Participation in the registry is completely voluntary.
You can withdraw from the registry at any time, without giving a reason.
Your medical care will not be affected if you decide to withdraw.

If you withdraw from the registry, no new information will be collected from you.

Data that has already been collected may still be used for research in an anonymized form, as allowed by the consent you provided.

Researchers will use the registry data to better understand:

• how MG symptoms change over time
• how treatments work in real-world settings
• the impact of MG on daily life and quality of life

All research uses de-identified data, meaning individuals cannot be identified.

Results may contribute to scientific publications, healthcare research, and future MG treatments.

Yes.

Where possible, updates about registry progress and research insights will be shared with participants and the MG community.

Yes.

The goal of the registry is to support the entire MG community. Findings may be shared through:

• research publications
• community updates
• presentations to MG organizations and researchers

If you have questions about the registry or need support, you can contact the registry team:

Email: vrmg@vitaccess.com

The team can help with:
• registration questions
• accessing your account
• technical support
• general questions about participation