Smartphone-based app as a tool to collect and analyze patient-reported data leading to improved therapeutic developments and to provide study information back to the patient participants to use in managing their health.
August 14, 2017 – Seattle, WA – Sage Bionetworks, a non-profit biomedical research accelerator, together with Celgene Corporation (NASDAQ: CELG) today announced the launch of 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 (www.mds-foundation.org), Cooley’s Anemia Foundation (www.thalassemia.org), and the Leukemia and Lymphoma Society (www.lls.org).
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. The Journey PRO app is available immediately for download from the App Store.
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global biopharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next-generation solutions in protein homeostasis, immuno-oncology, epigenetics, immunology and neuro-inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.
About Sage Bionetworks (www.sagebio2018.wpengine.com)
Sage Bionetworks is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. In pursuit of this Mission, Sage Bionetworks is working with others to assemble an information Commons for biomedicine that (1) is supported by an open compute space (Synapse: www.synapse.org), (2) supports open research collaborations and innovative DREAM Challenges, and (3) empowers citizens and patients with the tools to partner with researchers and share their data through Sage’s BRIDGE platform (http://sagebio2018.wpengine.com/bridge/) in order to drive the research studies that matter most to them.