A "pivot" Model to set up Large Scale Rare Diseases Information Systems: Application to the Fibromuscular Dysplasia Registry. - Université Pierre et Marie Curie Accéder directement au contenu
Article Dans Une Revue Studies in Health Technology and Informatics Année : 2015

A "pivot" Model to set up Large Scale Rare Diseases Information Systems: Application to the Fibromuscular Dysplasia Registry.

Résumé

The SIR-FMD project is a partnership between the Department of Genetics and Reference Centre for Rare Vascular Diseases at the Georges Pompidou European Hospital in Paris and the Medical Informatics and Knowledge Engineering Laboratory of Inserm. Its aim is to use an ontological approach to implement an information system for the French Fibromuscular Dysplasia Registry. The existing data was dispersed in numerous databases, which had been created independently. These databases have different structures and contain data of diverse quality. The project aims to provide generic solutions for the management of the communication of medical data. The secondary objective is to demonstrate the applicability of these generic solutions in the field of rare diseases (RD) in an operational context. The construction of the French FMD registry was a multistep process. A secure platform has been available since the beginning of November 2013. The medical records of 471 patients from the initial dataset provided by the HEGP-P
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Dates et versions

hal-01502289 , version 1 (05-04-2017)

Identifiants

  • HAL Id : hal-01502289 , version 1

Citer

L Toubiana, A Ugon, A Giavarini, J Riquier, J Charlet, et al.. A "pivot" Model to set up Large Scale Rare Diseases Information Systems: Application to the Fibromuscular Dysplasia Registry.. Studies in Health Technology and Informatics, 2015, 210, pp.887-91. ⟨hal-01502289⟩
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