Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study

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 Graf von der Schulenburg, Ulf Persson, Karine Chevreul, Giovanni Fattore, Melany Worbes-Cerezo, Mark Sefton and Julio López-Bastida

Health Policy, 2012, vol. 108, issue 1, 19-26

Abstract: 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.

Keywords: Rare diseases; Delphi approach; Health-related quality of life; Burden of illness (search for similar items in EconPapers)
Date: 2012
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Citations: View citations in EconPapers (6)

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Persistent link: https://EconPapers.repec.org/RePEc:eee:hepoli:v:108:y:2012:i:1:p:19-26

DOI: 10.1016/j.healthpol.2012.08.001

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