MyRealWorld MG FAQ
FAQ for participants
How is my privacy protected?
How much time will it take to complete the surveys? Will I have to do this often?
On average, the surveys will take around 20 minutes to complete every month. You can receive notifications to let you know when a survey is ready.
I don’t have a smartphone; can I borrow one?
You may borrow a smartphone from friends or family, but a smartphone is not provided to participants as part of the study.
Does the app work better on Android or iOS operating systems?
Neither is better than the other; the app is designed to work on both operating systems.
Can I use the app on more than one device?
The app is available only for smartphones. You can install the app on several smartphones and use the same login details for each of them. You will need to log in again each time you switch devices.
What happens if I want to leave the study?
If you’d like to leave the study, you can discontinue use and uninstall the app at any time. If you would like your information to be removed from the study database, you can contact Vitaccess at email@example.com.
Will I be compensated or paid for participating in the study?
No compensation or payment will be given for participating in this study.
How will the study results be presented?
Before being presented, your study information will be grouped with that of other participants, and identifying information will be removed. Results will be presented to members of the study’s scientific advisory board, argenx and Vitaccess. Some of the results will also be shared with participants within the “Knowledge” section of the app and via social media channels of Patient Advocacy Groups.
How will researchers use the data?
The data collected during the study will be used by authorized researchers to better understand MG management, identify new topics for research, and contribute to the understanding of MG.
Will the results be published?
Yes. argenx, the study scientific advisory board, and authorized researchers may publish data from this study. Before being published, your study information is grouped with that of other participants, and identifying information is removed.
Why is the tracker section of the app closed after a period?
The tracker is only open for you to edit for a limited period each month, which is aligned with the time the surveys are available too. This allows us to match your tracker entries with your survey responses, so we can see whether any events you report in the tracker affect your survey responses.
Can I edit a previous wrong answer?
For the surveys, you can go back to earlier screens and change answers, but once you complete a survey and submit your answers, they cannot be changed. In the tracker section, in some situations you can provide additional information once you have submitted your answers. For instance, you may answer that you have not had any rescue medication, then if you subsequently do receive rescue medication later in the month, you can record this, provided the tracker is still open for completion.
I have difficulties entering my password. What can I do?
Please check whether your font is set to ‘Larger Accessibility Sizes’. If it is, please switch the feature off for the purpose of setting the password. Afterwards you can change font size as you prefer.
If you have any questions or concerns about the app that are not listed here, please email us at firstname.lastname@example.org.
Clinicians’ Frequently Asked Questions
How was the MyRealWorld MG study developed?
The MyRealWorld MG study was developed by Vitaccess and argenx in collaboration with a scientific advisory board (SAB) of patient advocacy groups, expert MG clinicians and researchers from each of the scope countries (the US, Japan, Germany, the UK, France, Italy, Spain, Canada and Belgium), who provided input on the study design and protocol. Details of the SAB’s role and its members can be found on the study website.
Have you collaborated with clinicians in my country?
The study’s scientific advisory board (SAB) includes clinicians from each of the scope countries (the US, Japan, Germany, the UK, France, Italy, Spain, Canada and Belgium). Details of the SAB’s role and its members can be found on the study website.
Has the study gone through ethics committee review and approval?
Prior to each country launch, the study was reviewed and approved by an appropriate institutional review board or ethics committee.
How is the MyRealWorld MG study intended to help me as a healthcare professional to better understand my patients?
The study aims to grow to become a longitudinal dataset, covering burden of disease, health-related quality of life and health resource-utilization, which we hope will offer insights about how MG and its management affect patients’ daily lives. Researchers wishing to access de-identified, aggregated data can apply online, subject to approval from the study’s scientific advisory board.
Furthermore, participants themselves can use the study app to record information about themselves and their condition, which they may also choose to share with you (their healthcare provider) as part of their MG management. Currently, patients can record and share their medical history with you, as well as any side effects experienced, lost work or study time, and healthcare visits within the past month.
Where can I find more information about the study to share with my patients?
Information about the study is available on the study website.
What can patients expect from participating in this study?
In addition to having the opportunity to have their voice heard by contributing towards innovative research, patients can use the study app as a tool to record information about their condition, people can see their current profile data and this month’s tracker, which they can refer to during medical consultations. The cannot see their survey results. The app also contains a “Knowledge” section, which includes Myasthenia Gravis Foundation of America (MGFA) information about MG.
If a participant has technical difficulties, is support available?
There is an online help section as part of the study website, which includes an FAQ section. If personalized help is required, participants can contact email@example.com.
Data and governance
Why are questions about COVID-19 included in the MyRealWorld MG study?
Earlier this year, during development of the study, the scientific advisory board agreed that COVID-19 was impacting the MG community in significant ways. They felt that the impact of COVID-19 on people with MG was not fully understood. It was determined that MyRealWorld MG might offer an opportunity to assess the impact of COVID-19 on MG patients internationally.
Why do you ask for ZIP/post code information?
The purpose of gathering ZIP/post code is to explore whether there are any regional differences in MG care. ZIP/post code data will only be used for geographical research purposes.
Who owns the data, and can it be accessed?
Intellectual property associated with the data is owned by the sponsor, argenx. The personal data remains owned by the participants of the study. However, a key tenet of the study governance is a framework in which researchers can apply to the study’s scientific advisory board (SAB) for access to the dataset. We hope that MyRealWorld MG can become a valuable asset for the research community. Researchers wishing to access de-identified, aggregated data can apply online, subject to SAB approval.