What is “elevateMS”?
elevateMS is an iPhone app-based study designed to monitor and understand the variations in symptoms of Multiple Sclerosis or MS . Living with MS disease means coping with symptoms that change daily. Yet these daily changes are not tracked frequently enough. The elevateMS app will use questionnaires, sensor data from your phone, to help you track your condition 24x7, allowing you to review trends and share this information with researchers.
Who is eligible to participate in elevateMS?
Anyone over the age of 18 who lives in the US, understands English and has a personal iPhone is eligible to take part in the elevateMS research study in the US.
I don’t have MS disease. Can I participate in elevateMS?
Yes! Participants without MS will be a comparison group. Participation from volunteers who do not have MS will enable researchers to compile greatly needed, age-matched control data.
Who is running the elevateMS study?
elevateMS is run by Sage Bionetworks, a nonprofit research organization in collaboration Novartis Pharmaceuticals Corporation. Sage president Lara Mangravite, PhD, is the study’s principal investigator.
Will I have access to my data?
Yes! You will be able to see trends in your data within the study app once you have contributed 3 measurements and you will be able to request a download of all your study data.
Who else will have access to my data?
This study is unique in that it gives you the choice of how to share your data. You can elect to share your coded study data (without your name or directly identifying information) with the study team and research partners only, or to share more broadly with other qualified researchers worldwide who registered with Synapse, Sage’s research platform. You can set your data sharing options during the enrollment process within the app and/or anytime thereafter on the app settings.
For regulatory purposes, your study data, account information and signed consent form may also be reviewed by the US Department of Health and Human Services agencies, Office for Human Research Protection, and other agencies as required by law for verification of the research procedure and data, in addition to the Institutional Review Board who monitors the safety, effectiveness and conduct of the research being conducted.
How is my privacy protected?
We are committed to protecting your privacy. Except as required by law, you will not be identified by your name or by any other direct personal identifier. Your contact information, including your name and e-mail address will be stored separately from the study data. We will use a random code number instead of your name on all your study data. This code cannot be used to directly re-identify you. Information about the code will be kept in a secure system. Only the study organizers and some IT staff will have the key to associate your coded study data to your name and account information. Your coded study data (without your name) will be encrypted and stored on a secure cloud server to prevent improper access. Sage or anyone else affiliated with elevateMS will never sell, rent, or lease your contact information. The elevateMS app does NOT access your personal contacts, other applications, text message content, or Web sites visited.
Will researchers contact me any other way, such as by email or phone?
You will mostly receive notifications through the app. Occasionally, researchers may also send email announcements to participants.