Sage Bionetworks and Celgene have launched a new Apple iPhone-based mobile study, Journey PRO, to learn more about the disease burden borne by people with chronic anemia due to beta-thalassemia, myelofibrosis and myelodysplastic syndromes.
The Journey PRO study will use Apple’s ResearchKit framework to collect survey data from participants, who will conduct neurological self-assessments using Digital Artifacts’ BrainBaseline cognitive testing software. Researchers will also collect data with the iPhone HealthKit and various fitness tracking wearables.
The idea is to develop a tool that can evaluate how effective new treatments will be at reducing the burden of chronic anemia diseases on patients.
“Understanding the impact of disease on daily living is important to patients as well as researchers,” Lara Mangravite, president of Sage Bionetworks and the study’s principal investigator, said in a press release. “For this reason, Journey PRO will provide direct and immediate information back to research participants to help them manage their health.”
Journey PRO developers designed the app to help chronic anemia patients manage their health, aided by input from chronic anemia community members and patient representatives recruited through the nonprofit MDS Foundation, Cooley’s Anemia Foundation and the Leukemia and Lymphoma Society. Patients can use the app, for example, to track key health data such as transfusion records, lab values and appointment scheduling. Participants can also access their study data online, download and share it with their healthcare providers.
The Journey PRO study is open to U.S. participants over the age of 18 who have an iPhone5 or later running the iOS 8 operating system or later.
Patients diagnosed with myelodysplastic syndromes, beta-thalassemia and myelofibrosis are encouraged to enroll in the study. People without a chronic anemia diagnosis can also participate by providing control data to help quantify differences in quality-of-life measures for patients in the chronic anemia community and healthy controls. The app is free and available to download from the Apple App Store.
