Browsing by Subject "Rare disease"

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  • Comparison of different approaches applied in Analytic Hierarchy Process - An example of information needs of patients with rare diseases 
    Pauer, Frederic; Schmidt, Katharina; Babac, Ana; Damm, Kathrin; Frank, Martin; Schulenburg, Johann-Matthias Graf von der (London : BioMed Central Ltd., 2016)
    Background: The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. Studies have shown that there are several different approaches to data acquisition and data aggregation. The aim of this ...
  • Real-world evidence for coverage determination of treatments for rare diseases 
    Dayer, Victoria W.; Drummond, Michael F.; Dabbous, Omar; Toumi, Mondher; Neumann, Peter; Tunis, Sean; Teich, Nelson; Saleh, Shadi; Persson, Ulf; Schulenburg, Johann-Matthias Graf von der; Malone, Daniel C.; Salimullah, Tay; Sullivan, Sean D. (London : BioMed Central, 2024)
    Health technology assessment (HTA) decisions for pharmaceuticals are complex and evolving. New rare disease treatments are often approved more quickly through accelerated approval schemes, creating more uncertainties about ...
  • Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe 
    Angelis, Aris; Kanavos, Panos; Lopez-Bastida, Julio; Linertova, Renata; Oliva-Moreno, Juan; Serrano-Aguilar, Pedro; Posada-de-la-Paz, Manuel; Taruscio, Domenica; Schieppati, Arrigo; Iskrov, Georgi; Brodszky, Valentin; Schulenburg, Johann-Matthias Graf von der; Chevreul, Karine; Persson, Ulf; Fattore, Giovanni (Heidelberg : Springer, 2016)
    BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a ...