The Journey PRO research study, led by Sage Bionetworks and funded by Celgene Corporation, was designed to improve the understanding of the quality of life of people living with chronic anemia due to myelodysplastic syndromes (MDS), myelofibrosis, and beta-thalassemia. In consultation with patient representatives, Sage Bionetworks designed and developed a mobile app that is both a personal self-tracking tool for patients and a new instrument for researchers.
The Journey PRO app uses patient self-reported outcomes, administers cognitive assessments, and uses the participant’s iPhone and Apple Watch to collect information on mobility and cardiovascular fitness levels of participants. From these data streams, we aim to develop a tool to evaluate the efficacy of new treatments for reducing the impact of chronic anemia and similar conditions on patients. This study is nearing the end of active data collection and we are currently analyzing data and planning for follow up studies.
The Journey PRO study is no longer recruiting study participants.