The RARAS framework enhances data quality and interoperability in rare disease research, indicating significant improvements in data-sharing practices.
Key Points
The RARAS governance model improved data integration across 45 rare disease centers, enhancing data-sharing practices.
FAIR assessment using the F-UJI tool indicated a 50% FAIR score, highlighting strengths in interoperability but gaps in metadata accessibility.
A structured Data Management Plan was developed using the ARGOS platform, focusing on data standardization and stakeholder engagement.
Challenges included limited digital literacy and heterogeneous data collection practices, underscoring the need for better automation and validation.