Laurent Toubiana, Adrien Ugon, Alessandra Giavarini, Jérémie Riquier, Jean Charlet, Xavier Jeunemaître, Pierre-François Plouin, Marie-Christine Jaulent. A "pivot" Model to set up Large Scale Rare Diseases Information Systems: Application to the Fibromuscular Dysplasia Registry. In Ronald Cornet, Lacramioara Stoicu-Tivadar, Alexander Hörbst, Carlos Luis Parra Calderón, Stig Kjær Andersen, Mira Hercigonja-Szekeres, editors, Digital Healthcare Empowering Europeans - Proceedings of MIE2015, Madrid Spain, 27-29 May, 2015. Volume 210 of Studies in Health Technology and Informatics, pages 887-891, IOS Press, 2015. [doi]
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