Landscape analysis of available European data sources amenable for machine learning and recommendations on usability for rare diseases screening.
Ralitsa D RaychevaKostadin KostadinovElena MitovaGeorgi IskrovGeorgi StefanovMerja VakevainenKaisa ElomaaYuen-Sum ManEdith GrossJana ZschüntzschRichard RöttgerRumen StefanovPublished in: Orphanet journal of rare diseases (2024)
The most important results of our study demonstrate not enough sufficient FAIR principles adherence and low willingness of the EU health databases to share patient information, combined with some legislation incapacities, resulting in barriers to the secondary use of data.