ME&MGopen is a research study which aims to better understand and manage Myasthenia gravis.
Participants will get free access to the ME&MGopen app, which allows participants to complete assessments and take part in the study remotely. Participants will be compensated up to $500 USD for taking part!
ME&MGopen is sponsored by Ad Scientiam and conducted in partnership with Lindus Health.
The objectives of this research study are to collect data on patients' MG symptoms in a real-life setting, to assess adherence to the use of the ME&MGopen app, and user experience and satisfaction with the app.
By participating in this study, you will help to provide researchers with meaningful data on MG in real life.
There are no obvious disadvantages or risks to taking part in the study.
Help us better understand the lives of people with MG
Complete tests monthly to help collect data for researchers
Receive up to a maximum of $500 USD in amazon gift vouchers at the end of the study
The mobile app also includes online questionnaires related to activities of daily living, pain, insomnia, quality of life and depression.
The research organization Lindus Health will be conducting the study together with Ad Scientiam.
Breathing
Dysarthria (difficulty speaking)
Ptosis (eyelid drooping)
Arm and leg weakness
The ME&MGopen application is an investigational software for research purposes only.
ME&MGopen is not intended for use in the diagnosis of diseases or other conditions, or in the cure, mitigation, treatment or prevention of disease/conditions. Neither the app nor any other part of the software is intended to provide support to clinical decision making, diagnostics, place a medical opinion or give any treatment recommendation.
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Take our quick online pre-screener to see if you are likely to be eligible
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During a short video call, you will be able to ask a member of the study team any questions. They will confirm your MG diagnosis and your consent to participate. You’ll also download the ME&MGopen app, get unique credentials to login in to the app, and special credentials to answer questionnaires on a web platform.
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You will be asked to take 5 tests each month using the app, which will take approximately 10 minutes to complete and one or two questionnaires per week. You’ll also fill-in some questionnaires on the web platform. It's important to answer these in time, and you'll receive reminders via email. You will be able to contact a member of the study team for support and questions anytime.
The study takes place remotely, with no in-person doctor or hospital visits required.
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After 12 months of participation, you will receive a notification and instructions to uninstall the app, and the study will be complete! The Lindus Health team will get in touch to pay your financial compensation for taking part.
Ad Scientiam is a young French company created in 2013, based in Paris. Our team is composed of researchers, data science engineers, user experience experts, interface designers, web and mobile developers, clinical project managers and medical innovation specialists. We work together in synergy to develop the most appropriate digital solutions in collaboration with medical experts and patient associations.
At the heart of Ad Scientiam’s project is a conviction: continuously measuring and following the evolution of severe and disabling diseases in real life is the key to better care for patients. Ad Scientiam is taking this scientific and technological bet, so that today each patient can be an actor in their own health and to accelerate the development of new treatments. We are committed to ensuring that the medicine of tomorrow is more predictive, preventive and individualized. Their use allows Ad Scientiam to provide innovative, easy-to-use and intuitive solutions.
Please feel free to contact us with any questions you may have that we haven’t covered below.
Enrollment in the US started March 1st, 2023, and in Canada on June 21st, 2023. You can enroll until August 2025.
If you want to end your participation, you can do so by contacting the study team at meandmgopen@lindushealth.com. You are free to uninstall the app at any time. We would appreciate it if you could provide feedback before doing so to help us improve studies in the future.
Researchers will use your data to better understand MG, including symptoms and patients experience, and to learn about user experience with digital tools for MG.
You will receive up to a maximum of $500 USD in amazon gift vouchers at the end of the study to compensate you for your time.
All health data collected in the study will be kept strictly confidential. No individually identifiable data will be shared publicly. Only aggregated data will be published at the end of the study.
Yes, the published results will be available online after the end of the study.
You can contact Lindus Health by emailing meandmgopen@lindushealth.com or by calling: US +1(833) 2284900 or Canada +1 (844) 3402553
Each month, you will be asked to complete digital tests and online questionnaires. These tests and questionnaires should take approximately 35 minutes to complete per month, but don't need to be completed all at once! We will send you a reminder to complete the tests and questionnaires when it is time to do so.
The app was created by Ad Scientiam, in collaboration with patients, MG experts, and patient advocacy groups.
No, the objectives of the study are observational, and the results of the digital tests and e-questionnaires will not be shown to you. However you will have access to the global results of the study.
Your doctor will not be able to see your results either. Only the researchers will have access the results of the tests and questionnaires.
Once your participation in the study is finished, you will receive a notification to uninstall the app, and the study will be complete. You’ll first need to log-out to ensure that the data of the last tests that you have performed will be synchronized with the app server. Then delete the application from your phone as you would for any other application.
The following complications of phone applications including self testing functions may appear : occasional temporary fatigue following the execution of some tests, exacerbation of anxiety states and/or depression triggered by test results, or an inability to perform the tests, and physical injuries when executing some tests in an unsafe environment or state of health.
The objectives of the study are to collect data on MG from the patient’s perspective and to generate knowledge about the disease and about digital tools use in real life.
Yes, either an Apple iPhone with at least iOS 14 (or later) or an android smartphone with Android 8 (or later) is required for participation in this study.
Lindus Health and Ad Scientiam are committed to protecting the privacy and security of the personal data. Please see the privacy policy here for more information about how personal data are stored and processed.
No, a smartphone capable of running either iOS14 (Apple iPhone) or later or an Android smartphone with Android 8 (or later) is required for participation in this study.
Yes, the provided login can be used on several smartphones at once. Online questionnaires can be accessed from any device.
Yes - the study has been approved by Salus IRB for participants resident in the United States (Approval number 23034) and by Veritas IRB for participants resident in Canada (Approval/Tracking number 2023-3300-14946-5)
In the ME&MGopen app: You can change the answer to a questionnaire during the test, however, once the test is validated, you can no longer change your answers. The digital tests can be restarted if needed. For online questionnaires, once the questionnaire is submitted, please contact the Lindus Health team to change an incorrect answer at meandmgopen@lindushealth.com.
If you forget your password, please contact the Lindus Health team at meandmgopen@lindushealth.com.
CAUTION - Investigational device. Limited by United States law to investigational use.
Copyright © 2023 Lindus Health Limited. Privacy policy.