Sage Bionetworks, a nonprofit biomedical research accelerator, together with Celgene launched Journey PRO, a mobile health research study designed to improve the understanding of disease burden on people living with chronic anemia due to myelodysplastic syndromes (MDS), myelofibrosis and beta-thalassemia.
This study uses mobile and wearable technologies to quantify the daily burden of chronic anemia on patients living with these diseases. The study utilizes the Apple ResearchKit framework to collect data from participants using surveys, neurological self-assessments using the BrainBaseline cognitive testing software from Digital Artifacts, health data collected from the iPhone HealthKit, and fitness tracking wearables, among others. By following participants using these quantitative assessments, we aim to develop a tool to evaluate the efficacy of new treatments for reducing the impact of these diseases on patients.
“Understanding the impact of disease on daily living is important to patients as well as researchers,” said Lara Mangravite, President of Sage Bionetworks and PI of the study. “For this reason, Journey PRO will provide direct and immediate information back to research participants to help them manage their health.” The Journey PRO app was designed with input from members of the chronic anemia community to support patients in the management of their health. Participants may use the app to track key health data (e.g., transfusions, lab values) and the scheduling of appointment dates. Participants will also be able to visualize their study data and may choose to download the data and share it with their healthcare team. This design was developed in consultation with patient representatives recruited through the MDS Foundation, Cooley’s Anemia Foundation and the Leukemia and Lymphoma Society.
Journey PRO is open to participants over the age of 18 living in the United States with an iPhone model 5 or newer with iOS 8 or later. The research term encourages patients with a diagnosis of myelodysplastic syndromes (MDS), myelofibrosis, and beta-thalassemia to participate in this study. Individuals without a diagnosis of chronic anemia can also participate by providing valuable comparison data to further illustrate the difference in quality of life measures between the chronic anemia population and the general population.