Journey PRO is a study about chronic anemia and quality of life. In the study 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 the range of experience for people with and without chronic anemia. You will help us find out how mobile devices can help measure what life is like with chronic anemia. To learn more, please read the Journey PRO Study Information Sheet.
So long as you are 18 years old or older and have an iPhone model 5 or newer with iOS 8 or later, you can join Journey PRO. We specifically encourage people who have chronic anemia as a result of beta thalassemia, myelodysplastic syndrome (MDS), or myelofibrosis to join. We ask that you participate for 12 weeks in a row so we can track your experience across three months.
Scroll DownScroll Down
In the study we will measure quality of life by looking at health and well-being. We will ask you to download the Journey PRO app
To get started, we will ask you to do an informed consent process. It takes about 20 minutes. Read the study consent form here. We will also ask you to do a one-time health survey. It takes about 20 minutes.
We will track things like fatigue, memory, and fitness through this app. We will ask you to complete a daily survey. You can choose the time of day you complete it. The survey takes about 5 minutes to complete.
Once a week, we will ask you to do a 40 minute challenge. The challenge has a survey with about 30 questions. The challenge also has activities: a few quick brain tests and a short walking activity. You can choose the day and time you do the weekly challenge.
We will also give some participants an Apple Watch to use as a fitness tracker. It will measure activity and heart rate, which are signs of health and well-being. We will look for patterns in the data.
We hope that people will participate for at least 12 weeks in a row. This will help scientists look for patterns in the data. In this way, we hope to learn more about how chronic anemia impacts quality of life for people.
Sage Bionetworks, a 501(c)(3) nonprofit research organization, and its partners are conducting the Journey PRO research study. The Journey PRO research study is being funded by Celgene Corporation (www.celgene.com). Dr. Lara Mangravite is the Principal Investigator.
Lara Mangravite, PhDSage Bionetworks