Renata Linertová, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Manuel Hens-Pérez, Panos Kanavos, Domenica Taruscio, Arrigo Schieppati, Rumen Stefanov, Márta Péntek, Claudia Delgado, Johann-Matthias Graf von der Schulenburg, Ulf Persson, Karine Chevreul, Giovanni Fattore, Melany Worbes-Cerezo, Mark Sefton, Julio López-Bastida
OBJECTIVES: The BURQOL-RD project is intended to develop a disease based model capable of quantifying the socio-economic burden and health-related quality of life for patients with rare diseases (RDs) and their caregivers in Europe. We described the methodology used to select a set of 10 RDs to be approached in a pilot study. METHODS: BURQOL-RD project includes 23 partners from 8 European countries: Spain, UK, France, Germany, Sweden, Italy, Hungary and Bulgaria...
November 2012: Health Policy