The Vitaccess Real MG Registry

Patients

Be part of groundbreaking research — join the Vitaccess Real MG Registry today!

    Please select all that apply

    I have been diagnosed with myasthenia gravis
    I am based in the United States
    I meet the eligibility criteria for the Vitaccess Real MG Registry

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    Background

    Welcome to the Vitaccess Real MG Registry.​

    This is a project about myasthenia gravis (MG). The Vitaccess Real MG Registry has been developed by Vitaccess, a UK-based research company.​

    The aim is to build a database (also known as a registry) that can be used to conduct studies about MG and its treatment, so we can help improve the lives of people affected by the condition.

    Scientific Advisory Board

    The Vitaccess Real MG Registry is Sponsored by Vitaccess, a patient-centred research organization based in the United Kingdom.

    Our Scientific Advisory Board includes clinical and patient representation, and guides development and management of the registry to ensure it is conducted to the highest level of academic rigor, and in the best interest of patients.

    Dr Ali Habib

    UCI Health California

    Prof Saiju Jacob

    University Hospitals Birmingham

    Prof Francesco Saccà

    University of Naples

    Dr Zabeen Mahuwala

    UK HealthCare Kentucky

    Dr Kelly Gwathmey

    VCU Health

    Amanda Hayes

    Muscular Dystrophy UK

    Emma Ward

    Independent patient representative

    MGFA

    Partner

    Vitaccess

    Sponsor

    Who can take part?

    You can take part if you meet the following criteria:​

    • You are 18 years or older with a confirmed diagnosis of MG​
    • You are a resident in the US​
    • You have access to a smartphone, tablet, computer, or laptop​
    • You are willing and able to provide informed consent to take part in the registry, in your local language.​

    However, you cannot take part in the registry if:

    • You are participating in a clinical trial at the time of enrolment into the registry. Note that you will be eligible to participate in the registry once your participation in any clinical trial has ended.

    What will I be required to do?

    Step 1

    If you meet the eligibility criteria for the registry and would like to take part, you will be provided with an ID and PIN number to log onto the registry platform.

    Step 2

    We will explain the research project to you in detail and give you the opportunity to ask any questions. If you would still like to take part, we will ask you to sign a consent form.

    Step 3

    If you provide consent to participate, you will be asked to fill in monthly surveys about your MG and its impact on your life.

    Step 4

    To thank you for your time, you will build compensation in the form of vouchers for every survey you complete. ​

    With your permission, some helpful information from your medical records – like your treatment history and clinical background – will be included.

    This clinical data will be provided by your treating healthcare professional or will be captured by an “electronic medical record aggregator”. The way that we capture your clinical data will depend on how you are recruited to the registry.

    If we use the aggregator to capture your clinical data, we will ask you to go through a specific consent process for this.

    We plan to run the registry for 10 years. You can participate for as long as you choose, and you can stop participating at any time.

    We expect that each month, you will spend 15 minutes or less completing all core surveys.

    How and why do we capture data from medical records?

    Depending on how you are recruited to the registry, your medical records data could be collected by:​

    1. Your clinical team​
    2. An “electronic medical record aggregator”. EMR aggregators securely collect and organize health data from different doctors and hospitals, making it easier to see a full picture of your health over time. ​

    If your data is collected by an EMR aggregator, you will be able to access your medical records anytime through a secure patient portal. You will be able to add notes to your collected medical records for your own reference. ​

    Linking the survey data that you provide with your medical record data will give us a more complete understanding of your experiences as a person living with MG. ​

    Only approved research staff will have access to your information, and it will only be used for the purposes of this study.

    What's in it for me?

    1. Receive compensation

    As a token of appreciation for your valuable participation, you will receive vouchers.​

    2. Access your medical records

    With your consent, you can access all your collected healthcare records anytime through a secure patient portal.​

    3. Provide valuable insights

    Patient-reported data is the most valuable perspective on the disease, helping researchers discover new treatments and ways to manage MG.​

    4. Be heard

    As the real experts of MG, your experiences and insights guide new research and discoveries, potentially changing the course of MG in the near future.

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