The premise of Open Science is that research and medical management will progress faster if data and knowledge are openly shared. The value of Open Science is nowhere more important and appreciated than in the rare disease (RD) community. Research into...
BACKGROUND: Clinical trials and registry studies are essential for advancing research and developing novel treatments. However, these studies rely on manual entry of thousands of variables for each patient. Repurposing real-world data can significantly...
When developed jointly with clinical information systems, clinical data warehouses (CDWs) facilitate the reuse of healthcare data and leverage clinical research.
To describe both data access and use for clinical research...
Background: Temporal variability in health-care processes or protocols is intrinsic to medicine. Such variability can potentially introduce dataset shifts, a data quality issue when reusing electronic health records (EHRs) for secondary purposes...
