Sage Bionetworks and Celgene have initiated a mobile health research study 'Journey PRO' addressing quality of life for patients with chronic anaemia caused by myelodysplastic syndromes (MDS) myelofibrosis and beta-thalassemia.
The study will use a smartphone-based app and wearable technologies to collect and analyse patient-reported data to understand disease burden on these patients and for enhanced therapeutic developments.
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During the study period, Apple ResearchKit framework and various surveys will be employed to collect patient data, including Digital Artifacts’ BrainBaseline cognitive testing software for neurological self-assessments, and the iPhone HealthKit and fitness tracking wearables for health data collection.
The firms intend to use the results from these quantitative assessments to develop a tool for evaluating the efficacy of new treatments in minimising the impact of the diseases on patients.
Data obtained through the study will be immediately given to the patients to aid them in managing their health.
Sage Bionetworks president Lara Mangravite said: “Understanding the impact of disease on daily living is important to patients as well as researchers.
“For this reason, Journey PRO will provide direct and immediate information back to research participants to help them manage their health.”
Designed with input from chronic anaemia community members, the Journey PRO app will allow participants to track, download and share health data such as transfusions and lab values.
The study will include chronic anaemia patients aged 18 years and above, individuals diagnosed with myelodysplastic syndromes (MDS) myelofibrosis and beta-thalassemia, and is also open to non-diagnosed people to facilitate comparison in quality of life measures.
