The evaluation of real-world data (RWD) enables insights to be gained from a wide range of patient data collected in routine clinical practice. In addition, multicenter analyses represent a broad and representative patient population and have the potential to capture the actual treatment situation. As a basis for this, the definition of datasets and an infrastructure for data exchange is necessary.
View Article and Find Full Text PDFIntroduction: In German and international research networks different approaches concerning patient consent are applied. So far it is time-consuming to find out to what extent data from these networks can be used for a specific research project. To make the contents of the consents queryable, we aimed for a permission-based approach (Opt-In) that can map both the permission and the withdrawal of consent contents as well as make it queryable beyond project boundaries.
View Article and Find Full Text PDFStud Health Technol Inform
May 2023
Availability and accessibility are important preconditions for using real-world patient data across organizations. To facilitate and enable the analysis of data collected at a large number of independent healthcare providers, syntactic- and semantic uniformity need to be achieved and verified. With this paper, we present a data transfer process implemented using the Data Sharing Framework to ensure only valid and pseudonymized data is transferred to a central research repository and feedback on success or failure is provided.
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