What is the purpose of Journey PRO?

Journey PRO is a study about chronic anemia and quality of life. We will measure health and well-being using the Journey PRO app. We will track things like fatigue, memory, and fitness. You will help us learn about what life is like for people who have chronic anemia and people who don’t. You will help us find out how apps can help measure what life is like with chronic anemia.

Who can join Journey PRO?

You can join Journey PRO so long as:

  • You are an adult (age 18 or older) and
  • You live in the US and
  • You have an iPhone 5 or newer.

I don’t have chronic anemia. Can I take part in Journey PRO?

Yes, you are welcome to take part. People who do not have chronic anemia will be part of the “control” or comparison group in the study.

Who is running Journey PRO?

Sage Bionetworks is running Journey PRO. Sage is a not for profit organization that does health research. Journey PRO is being funded by Celgene Corporation (www.celgene.com).

Is the Journey PRO app free?

Yes, the Journey PRO app is free to download and use.

If I take part, will I get medical treatment or health advice?

Journey PRO is a research study. You will not get medical treatment or health advice if take part. If you have questions about your health, please see your doctor.

Will this affect my insurance or medical services?

Journey PRO is an observational study. It is not a clinical trial. We will not be asking you to change what you do or take medication as part of this study. It is not medical treatment. If you have questions about your health, please see your regular doctor.

Who can see my data?

Sage Bionetwork is running Journey PRO. Sage will be able to see your data. Sage will use your data for research on chronic anemia and quality of life. Sage has partners that help with research. We will share limited data with these partners. Celgene Corporation is funding Journey PRO. Celgene will be able to see your data. They will use your data for health research.

How is my privacy protected?

Your privacy is very important to us. We will take great care to protect it.

  • Your study data will be encrypted on your phone. Unauthorized people will not be able to access your study data on your phone easily.
  • We will separate your study data from the account information that identifies you. Your account information will not be stored with your study data.
  • Your study data will not be labeled with your name or other information that directly identifies you. We will label it with a random code. There will be a master list linking the codes to names, but we will keep it separate and secure.
  • All information we have about you will be stored on protected computers. We will limit and keep track of who sees the information.
  • We will tell you if there is a data breach.
  • Apple Health Kit is the only app on your phone that we will access. We will not access your contacts, photos, texts, email, or browsing history.

Can I see my data?

You can download a copy of your Performance by selecting the (share icon) at the top left of the Performance section.

Will I benefit from taking part in Journey PRO?

Journey PRO is not a medical treatment. It is a research study. You will not get direct medical benefit from taking part in it. You will be helping scientists make discoveries that may help others in the future with similar diseases.

You may indirectly benefit from taking part. For example, you will be able to see all of your study data. This information may be interesting to you. You may learn about your health and well-being. If you choose, you can share your Journey PRO information with your doctor.

I enrolled in the study, but I did not get a verification email. What should I do?

First check your spam folder to see if the email is there. If you do not see the verification email in your spam folder, you can press the “resend” button in the Journey PRO app.

I am already taking part in Journey PRO, but I have a new phone. What do I need to do to keep taking part?

Go to the iTunes store and download Journey PRO (link) on your new phone. Log in to Journey PRO with your password. You are ready to go!

My question isn’t answered here. Can I talk to someone?

Yes, we are happy to answer your questions by 1-206-667-2109 or toll-free 1-800-481-3122 or at journeyPRO@sagebase.org.

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