Sage Bionetworks (“Sage Bionetworks, “we,” or “us”) is a 501(c)(3) nonprofit biomedical research organization in the United States.
Sage Bionetworks is running the elevateMS research study sponsored by Novartis Pharmaceuticals Corporation. In the elevateMS research study, we are looking at how changes in MS symptoms affect daily life and wellness. We use the elevateMS mobile application to measure these changes. If you volunteer in this study we will ask you to use the elevateMS app. You can learn more about the study on the elevateMS website.
In general we collect all information that you give us directly. For example, you may contact us with questions or comments and give us your email address and other information. We only use such information to answer your questions. We also collect information passively when you use the website and app.
Before you can participate, you must download the app on your smartphone and register to the study. We will collect information from you through the elevateMS app as part of the registration and when you use the app for the study. Here is a list of what we will collect and when we will collect it:
As part of the registration you must complete the informed consent process and create an account.
Once you join the study we will collect information about your health and wellness through surveys and activities.
We will ask you to link the elevateMS app to HealthKit, the Apple health app. In this way, we may import information from HealthKit like your weight, height, the number of steps you take and/or your sleep patterns. Any information that we import from HealthKit will be treated the same as the information we collect in the elevateMS app directly.
It is important to note that we do not have control over the privacy policies or practices of HealthKit. You can participate in the elevateMS research study even if you do not want to link information from HealthKit to the elevateMS app.
We will NOT access your personal contacts, photos, text, or email messages on your smartphone. We will only collect information that you give to elevateMS.
In addition to using it for scientific research, we will use the information that we collect through the elevateMS app and website to ensure that they are working properly.
Also, we will use the information we collect to improve the app and to make it easier to use. For example, remembering information you have entered so it does not need to be re-entered.
We may use personal information, like your name and email address, to contact you. Some examples of why we might contact you are for administrative purposes or to tell you more about the elevateMS study.
We process the information we collect through the elevateMS app. Here are the steps we will take to process your information:
We will disclose (give out) information that we collect through the elevateMS app for five reasons.
We tell you about these reasons below. Except for these reasons, we will not give out your information that we collect through the elevateMS app to anyone without your permission.
Other than as described below, we will not sell, rent, lease, give away, disclose or share your personal information.
Five reasons we disclose information:
A cookie is a small file containing a string of characters that is sent to your computer when you visit a website. Cookies and similar technologies provides us with information on how you use the website and app. For example, cookies provide us with information on the number of visits to the website, what information is of interest to visitors to the website and the functionality of features in the app.
You have the choice to refuse and disable all cookies by altering the privacy settings of your browser. The help section of all major browsers will tell you how you can block or delete cookies from your system. We do not track people who use the elevateMS app or visit the study website. Because we do not track people, the elevateMS app and website do not respond specifically to Do Not Track (“DNT”) signals.
Sage Bionetworks takes data security very seriously. We use systems and procedures to protect the information we collect from you. This is to safeguard the confidentiality, integrity, and security of your information. These systems and procedures help us prevent accidental or unlawful loss, theft, and misuse. They help us prevent unauthorized access, disclosure, alteration, destruction, or any other type of unlawful processing. For instance, we separate the information that identifies you, like your name, from your other study data. We keep the information that identifies you in a separate, secure place. Still, experts in re-identification may be able to reverse our processes and figure out who you are. We cannot promise that the information we collect from you is completely secure or that you will remain anonymous.
You have rights and choices about the information we collect from you. For example, if there is an error in the information we collect from you, you have the right to make a request to have it fixed.
To make a request about the information we collect from you, email us at elevateMS@sagebase.org. Please note that we may keep a copy of all the information we collect from you. This is because we have a responsibility to keep backups and archives. We keep backups and archives for reasons like the prevention of fraud and abuse, analytics, and for satisfaction of legal obligations.
You can withdraw from (quit) the study at any time. If you would like to withdraw, click the “Leave study” link on your profile page in the elevateMS app. Or you can email us at elevateMS@sagebase.org to withdraw. It does not cost anything to withdraw. If you withdraw, we will stop collecting information from you. We will not use your information for any new research.
If you have questions about your rights and choices or would like more information about your rights and choices, you can email us at elevateMS@sagebase.org.
We may transfer the information you share with us to countries where you do not live. These countries may have different data protection laws than where you live. If we transfer your information, we will follow the laws about transferring data.
If you access the elevateMS app or participate in the study from anywhere outside of the United States, we may transfer your data. The information we collect may be transferred to, processed, and stored in the United States.
By using the elevateMS app or participating in the study, you consent to these types of cross border transfers of your information.
If you have any questions, comments or requests, please contact us.
1100 Fairview Avenue North
Seattle, WA. 98109
Version 1 (26 Jun 2017)