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.

Sage Bionetworks is committed to protecting the privacy of the users of the elevateMS app and Website. This privacy policy tells what we will do with the information we collect from you through the app or website.

By visiting the elevateMS website, joining the study, or using the elevateMS app, you agree to this Privacy Policy.

Information We Collect

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.

• Standard log files and usage data. When you visit the elevateMS website, we collect standard log information and usage data using cookies, beacons or similar technology (refer to “How We Use Cookies and Similar Technology” section). For example, we will collect your internet protocol address or your browser type. We also collect information about how you use the website and the app. For instance, which pages you access, amount of time spent on each page and your overall navigation of the website and the 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.

• Informed consent: The informed consent process explains the research study. You must consent to join the study. We will collect your first and last name and your signature as part of the informed consent process.

• Account creation: You must create your personal study account. When you create an account, we will collect a username, password, and your email address. We ask your date of birth. The elevateMS study is designed for people age 18 or older living with MS or not. We do not knowingly allow children under the age of 18 to join the elevateMS study.

Once you join the study we will collect information about your health and wellness through surveys and activities.

• Health surveys. As part of the elevateMS research study, we collect information about you. We will ask you about your health, medical history and wellness. Most of these questions are optional. We will ask a few required questions. For example, “Do you have MS?” These questions are required because we need to know the answers as part of the research study.

• Information imports. As part of the research study we will import information into the elevateMS app. For example, we will ask you to do a short walking activity. We will import information from the sensors in your smartphone about how far you walk and how long you walk for into the elevateMS app.

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.

• Location data.  We will ask you to link the elevateMS app to your smartphone’s GPS (global positioning system). We will use your GPS to tell us your time-zone and how far you travel when you use the app. This will help us understand how active you are. We do not collect your actual location, just the distance you travel.

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.

How We Use Information

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.

How We Process Information

We process the information we collect through the elevateMS app. Here are the steps we will take to process your information:

1. We will separate your account information like your name and email address from your study data like your answers to the surveys.
2. We will assign you a random study code. We will add this code to your study data. The key that links this code to your name is kept in a separate, secure location.
3. We will combine your coded study data (without your name) with the coded study data from other people in the elevateMS research study. We will use this combined data for our research.

Why We Disclose 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:

1. We will store the elevateMS research data we collect on Synapse. Synapse is a cloud-based research platform. Researchers from the sponsor, the study team and research partners will access and analyze the data. We may report the results of our research through blogs or scientific publications. Your name will not appear.
2. If we work with a service provider, we will give them the information they need to do the job we have asked them to do. A service provider is someone who is helping us with a part of the elevateMS research study. The service provider will have to sign a contract promising to use the information only for the job they are doing for us. Also, they will promise to keep the information we share with them secure.
3. We may give out information if we are required to do so by law. For example, to comply with state or federal laws, in response to a court order, subpoena or warrant, or to cooperate with law enforcement or other governmental agencies.
4. We may give out information:
   • To protect ourselves against liability
   • To protect ourselves from fraud, abuse, or unlawful activity
   • To investigate and defend ourselves against claims or allegations
   • To protect the elevateMS app and research study
   • To protect our rights
5. The information we collect from you as part of the elevateMS study may be considered a business asset. Business assets are the things that give a business value. If we go bankrupt or if Sage Bionetworks merges, is transferred, or acquired by another institution, the information we have may be transferred to them as a business asset.

This Study gives you the option to share your coded Study data more broadly, with other researchers worldwide, for use in this research and beyond to benefit future scientific research. If you choose to share your data broadly, your coded study data (responses to survey questions, activity measurements, etc) will be added to a shared dataset available to qualified researchers on the Sage Bionetworks Synapse servers (www.synapse.org). This shared dataset will be made available to qualified researchers. Qualified researchers are registered Synapse users who agree to use the data in an ethical manner, to do no harm and not attempt to re-identify or re-contact you unless you have chosen to allow them to do so. The sponsor and study team will have no oversight on the future research that qualified researchers may conduct with the coded study data. For more information about our data practices in the context of the Synapse research platform, see the Synapse Privacy Policy.

How We Use Cookies and Similar Technology

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.

Data Security

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.

Your Rights and Choices

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.

Cross-Border Transfer of Your Information

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.

Updates to this Privacy Policy

We may update this Privacy Policy. We will post any updates here, on this page with a revision date. Also, if we make major changes that alter your rights or obligations, we will try to tell you directly. For example, we may send you an email or put a pop-up message in the app. If you participate in the study or use the elevateMS app after we update the Privacy Policy it means you agree to the updated Privacy Policy.

Contact

If you have any questions, comments or requests, please contact us.

elevateMS@sagebase.org

Sage Bionetworks
1100 Fairview Avenue North
Seattle, WA. 98109
United States

Versions

Here is a list of the versions of this Privacy Policy

Version 1 (26 Jun 2017)

Version 2 (14Aug2017) Clarify the use of Cookies and Similar Technology (please refer to the “How We Use Cookies and Similar Technology”)