Interoperable Integration of a National Rare Disease Registry Into a Rare Eye Disease Data Warehouse: Implementation Study - Takeaways - MDSpire

Interoperable Integration of a National Rare Disease Registry Into a Rare Eye Disease Data Warehouse: Implementation Study

  • By

  • Camille Beluffi Marin

  • Marilyne Oswald

  • Laura Ratenet

  • Matthieu Stoll

  • Kirsley Chennen

  • Hélène Dollfus

  • May 26, 2026

  • 0 min

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  • 1

    The French Rare Diseases Ecosystem has established a comprehensive network for rare diseases, including the BNDMR data warehouse for centralized data collection.

  • 2

    FREDD was created to support research on rare eye diseases by enabling the secondary use of clinical data from expert centers across France.

  • 3

    FREDDEX is a data integration application designed to automate the transfer of data from BaMaRa to FREDD, enhancing interoperability between systems.

  • 4

    The lack of seamless interoperability in rare disease data systems poses challenges for data reuse and consistency across clinical and research settings.

  • 5

    National and European initiatives aim to improve data interoperability for rare diseases, but technical challenges in data transformation remain.

Original Source(s)

Interoperable Integration of a National Rare Disease Registry Into a Rare Eye Disease Data Warehouse: Implementation Study

  • by Camille Beluffi Marin, Marilyne Oswald, Laura Ratenet, Matthieu Stoll, Kirsley Chennen, Hélène Dollfus

  • May 26, 2026

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