Thalassemia Patients and Friends

Discussion Forums => Announcements => Topic started by: Andy on September 14, 2017, 05:39:47 PM



Title: US Residents With iPhone Needed to Study How Chronic Anemia Affects Their Lives
Post by: Andy on September 14, 2017, 05:39:47 PM
Looking for US residents with an iPhone who would like to take part in a study of the quality of life with chronic anemia. I find it interesting and encouraging that this study is funded by Celgene, the company currently running Phase 3 trials for Luspatercept, a drug that raises hemoglobin levels. There is no better way to give the patients what they actually want than by learning directly from those patients.
Life with chronic anemia is a journey. Some days the path might feel easy. Other days, it might as well be quick sand. With your help, we hope to smooth the road for people with chronic anemia.
The Journey PRO is a mobile health research study to track the ups and downs in quality of life associated with chronic anemia, review trends, and share this information with researchers. The Journey PRO app uses surveys, sensor data from your phone, and optional wearable device data to track quality of life.
Key Features:
Innovative activity-based measurements of health and well-being that include a short walking activity and several quick brain tests.
Import daily physical activity measurement though Apple Health app.
Connect with Apple Watch for heart rate and activity detail.
To be eligible to join this study you need to:
Be 18 or older.
Have chronic anemia as a result beta-thalassemia, myelodysplastic syndrome (MDS), or myelofibrosis of or not (be a control).
Be a U.S. resident.
Have a personal iPhone (iPhone 5 or newer). The app requires iOS 8 or later.
Journey PRO is available for download from the Apple App Store: https://itunes.apple.com/us/app/journeypro/id1233910002?mt=8
For additional information on the Journey PRO study, please check out our website: http://www.journeypro.org/
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).



Title: Re: US Residents With iPhone Needed to Study How Chronic Anemia Affects Their Lives
Post by: Pratik on September 15, 2017, 12:19:33 AM
Looking for US residents with an iPhone who would like to take part in a study of the quality of life with chronic anemia. I find it interesting and encouraging that this study is funded by Celgene, the company currently running Phase 3 trials for Luspatercept, a drug that raises hemoglobin levels. There is no better way to give the patients what they actually want than by learning directly from those patients.
Life with chronic anemia is a journey. Some days the path might feel easy. Other days, it might as well be quick sand. With your help, we hope to smooth the road for people with chronic anemia.
The Journey PRO is a mobile health research study to track the ups and downs in quality of life associated with chronic anemia, review trends, and share this information with researchers. The Journey PRO app uses surveys, sensor data from your phone, and optional wearable device data to track quality of life.
Key Features:
Innovative activity-based measurements of health and well-being that include a short walking activity and several quick brain tests.
Import daily physical activity measurement though Apple Health app.
Connect with Apple Watch for heart rate and activity detail.
To be eligible to join this study you need to:
Be 18 or older.
Have chronic anemia as a result beta-thalassemia, myelodysplastic syndrome (MDS), or myelofibrosis of or not (be a control).
Be a U.S. resident.
Have a personal iPhone (iPhone 5 or newer). The app requires iOS 8 or later.
Journey PRO is available for download from the Apple App Store: https://itunes.apple.com/us/app/journeypro/id1233910002?mt=8
For additional information on the Journey PRO study, please check out our website: http://www.journeypro.org/
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).


Why only iPhone?


Title: Re: US Residents With iPhone Needed to Study How Chronic Anemia Affects Their Lives
Post by: Andy on September 23, 2017, 01:46:45 PM
I think it's iPhone only because of specific capabilities of the iPhone to record physical measurements of patients.