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October 1, 2025BMC Digital HealthOpen Access

Paving the way for Brazil’s first national rare diseases registry: the RARAS data governance model

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Authors

FBFilipe Andrade BernardiVLVinícius LimaMAM.C. Alonso

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Overview

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.

Cite This Study

Bernardi et al. (2025) studied this question.

synapsesocial.com/papers/68dd91cbfe798ba2fc49882chttps://doi.org/10.1186/s44247-025-00200-5
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Mapping Rare Disease Registries in Brazil: Situational Analysis and Proposal for National Unification2026
  2. 2A Knowledge Representation Framework for Rare Diseases Governance within the Brazilian Healthcare System2026
  3. 3Rare diseases, trends and challenges for scientific advances: a snapshot of a decade of research in Brazil2024
  4. 4Promoting Comprehensive Care for People With Rare Diseases in a Tertiary Care Setting in Brazil: Protocol for a Mixed Methods Implementation Study (Preprint)2024
  5. 5Strengthening rare disease response in the community of Portuguese-speaking countries: a position paper on digital health innovation and international cooperation2026