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 Journey PRO research study. In the Journey PRO research study, we are looking at how chronic anemia impacts quality of life. If you join this study we will ask you to download and use the Journey PRO app. You can learn more about the study on the Journey PRO website.
Information We Collect
In general, we collect all the information that you give us directly. We also collect information passively when you visit the Journey PRO website or use the Journey PRO app.
Before you can join Journey PRO, you must download the app on your smartphone and register for the study. We will collect information from you through the Journey PRO app as part of the registration process 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 heath and wellness through surveys and activities.
We will ask you to link the Journey PRO 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 Journey PRO 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 Journey PRO research study even if you do not want to link information from HealthKit to the Journey PRO 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 Journey PRO.
How We Use Information
In addition to using it for scientific research, we will use the information that we collect through the Journey PRO 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 Journey PRO study.
We will NOT use your personal information for advertising.
How We Process Information
We process the information we collect through the Journey PRO app. Here are the steps we will take to process your information:
Why We Disclose Information
We will disclose (give out) information that we collect through the Journey PRO app for five reasons. We tell you about these reasons below. Other than the reasons below, we will not sell, rent, lease, give away, disclose or share your personal information without your permission.
Five reasons we disclose information:
Do Not Track
We do not track people who use the Journey PRO app or visit the study website. Because we do not track people, the Journey PRO 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.
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 JourneyPRO@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 Journey PRO app. Or you can email us at JourneyPRO@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 JourneyPRO@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 Journey PRO 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 Journey PRO 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 (14 Mar 2017)