Building a National Interoperable Rare Eye Disease Data Warehouse: Methodological Framework and Implementation Report From the French Rare Eye Disease Database (FREDD) Initiative
Camille Beluffi Marin, Marilyne Oswald, Laura Ratenet, Matthieu Stoll, Kirsley Chennen, Nathalie Chabin, Julie Hubert, Grégoire Rey, Guylène Le Meur, Vasily Smirnov, Isabelle Meunier, Isabelle Audo, Hélène Dollfus · 2026
Read Building a National Interoperable Rare Eye Disease Data Warehouse: Methodological Framework and Implementation Report From the French Rare Eye Disease Database (FREDD) Initiative by Camille Beluffi Marin, Marilyne Oswald, Laura Ratenet, Matthieu Stoll, Kirsley Chennen, Nathalie Chabin, Julie Hubert, Grégoire Rey, Guylène Le Meur, Vasily Smirnov, Isabelle Meunier, Isabelle Audo, Hélène Dollfus (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13507042.txt.
Description
Camille Beluffi Marin and co-authors report the build of a national data warehouse for rare eye diseases in France. Their 2026 paper sets out the frame, the legal path, and early results. Rare eye diseases are uncommon and varied, and their data sit scattered, which weakens joint study. French rules on health data warehouses are strict.
The system uses a three-layer design for gathering, processing, and research reuse. It extends the national rare disease data set with eye-specific fields and an image store. Standard vocabularies and a parsing tool link it to the existing registry. Approval came in April 2024, and gathering began in March 2025 at five pilot centers. In one year it logged data for 1,649 patients and over 10,000 eye images.
Catalog record
| CREATOR | Camille Beluffi Marin, Marilyne Oswald, Laura Ratenet, Matthieu Stoll, Kirsley Chennen, Nathalie Chabin, Julie Hubert, Grégoire Rey, Guylène Le Meur, Vasily Smirnov, Isabelle Meunier, Isabelle Audo, Hélène Dollfus |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 35 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |