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Publications
Swertz M, van Enckevort E, Oliveira JL, Fortier I, Bergeron J, Thurin NH, Hyde E, Kellmann A, Pajouheshnia R, Sturkenboom M, Cunnington M, Nybo Andersen A-M, Marcon Y, Goncalves G, Gini R. Towards an interoperable ecosystem of research cohort and real-world data catalogues enabling multi-center studies. Yearb Med Inform. 2022 Aug;31(1):262-72. doi: 10.1055/s-0042-1742522
Noel E, Dussol B, Lacombe D, Bedreddine N, Fouilhoux A, Ronco P, Genevaz D, Bekri S, Hagege A, Dupuis-Simeon F, Derrien V, Germain DP, Lidove O. Fabry patients' needs and expectations regarding their treatment in France: development of a Patients' Need Questionnaire (PNQ Fabry). Poster presented at the 2019 WORLDSymposium; February 2019. Orlando, FL. [abstract] Mol Genet Metab. 2019 Feb; 126(2):S110. doi: 10.1016/j.ymgme.2018.12.278