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Visualization of Similar Patients in a Clinical Decision Support System for Rare Diseases - A Focus Group Study
Stud Health Technol Inform. 2021 May 24;278:49-57. doi: 10.3233/SHTI210050.ABSTRACTThe diagnosis of patients with rare diseases is often delayed. A Clinical Decision Support System using similarity analysis of patient-based data may have the potential to support the diagnosis of patients with rare diseases. This qualitative study has the objective to investigate how the result of a patient similarity analysis should be presented to a physician to enable diagnosis support. We conducted a focus group with physicians practicing in rare diseases as well as medical informatics researchers. To prepare the focus group, a literatu...
Source: Studies in Health Technology and Informatics - May 27, 2021 Category: Information Technology Authors: Jannik Schaaf Martin Sedlmayr Hans-Ulrich Prokosch Niels Tegtbauer Dennis Kadioglu Johanna Schaefer Martin Boeker Holger Storf Source Type: research

The Registry Data Warehouse in the European Reference Network for Rare Respiratory Diseases - Background, Conception and Implementation
Stud Health Technol Inform. 2021 May 24;278:41-48. doi: 10.3233/SHTI210049.ABSTRACTRare lung diseases affect 1.5-3 million people in Europe while causing bad prognosis or early deaths for patients. The European Reference Network for Respiratory Diseases (ERN-Lung) is a patient centric network, funded by the European Union (EU). The aims of ERN-LUNG is to increase healthcare and research regarding rare respiratory diseases. An initial need for cross-border healthcare and research is the use of registries and databases. A typical problem in registries for RDs is the data exchange, since the registries use different kind of d...
Source: Studies in Health Technology and Informatics - May 27, 2021 Category: Information Technology Authors: Jannik Schaaf James Chalmers Heymut Omran Petra Pennekamp Olivier Sitbon Thomas O F Wagner Abilio Reis Dennis Kadioglu Holger Storf Source Type: research