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.

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

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

   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:

  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 Journey PRO 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 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:

  1. We will store the Journey PRO research data we collect on Synapse. Synapse is a cloud-based research platform. Researchers from the study team and research partners will access and analyze the data. We will report the results of our research through blogs or scientific publications. Your name will not appear.
  1. 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 Journey PRO 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.
  1. 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.
  1. 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 Journey PRO app and research study
    • To protect our rights
  2. The information we collect from you as part of the Journey PRO 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.

   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.

   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 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 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

    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.

    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 Journey PRO app after we update the Privacy Policy it means you agree to the updated Privacy Policy. 



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

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


Here is a list of the versions of this Privacy Policy

Version 1 (14 Mar 2017)