Jardin Data Management Survey

JARDIN Data Management Survey was conducted as part of Work Package 8, Task 8.1 of the Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN). This study aimed to identify the challenges and opportunities involved in integrating local hospital rare disease patient data into European Reference Networks (ERNs). The participation in the survey was possible from July 2024 to end of September 2024. https://jardin-ern.eu/ The corresponding manuscript "Rare Disease Data Management across Europe: Insights from the JARDIN Survey on Data Sharing and Interoperability" can be found as a preprint version via the DOI: https://doi.org/10.21203/rs.3.rs-8164392/v1