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

Listed author(s):
  • Linertová, Renata
  • Serrano-Aguilar, Pedro
  • Posada-de-la-Paz, Manuel
  • Hens-Pérez, Manuel
  • Kanavos, Panos
  • Taruscio, Domenica
  • Schieppati, Arrigo
  • Stefanov, Rumen
  • Péntek, Márta
  • Delgado, Claudia
  • Graf von der Schulenburg, Johann-Matthias
  • Persson, Ulf
  • Chevreul, Karine
  • Fattore, Giovanni
  • Worbes-Cerezo, Melany
  • Sefton, Mark
  • López-Bastida, Julio

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.

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Article provided by Elsevier in its journal Health Policy.

Volume (Year): 108 (2012)
Issue (Month): 1 ()
Pages: 19-26

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Handle: RePEc:eee:hepoli:v:108:y:2012:i:1:p:19-26
DOI: 10.1016/j.healthpol.2012.08.001
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  1. Wang, Caroline C. & Wang, Yan & Zhang, Kaining & Fang, Jing & Liu, Wei & Luo, Shusheng & Tang, Songyuan & Wang, Shaoxian & Li, Virginia C., 2003. "Reproductive health indicators for China's rural areas," Social Science & Medicine, Elsevier, vol. 57(2), pages 217-225, July.
  2. Serrano-Aguilar, P. & Trujillo-Martín, M.M. & Ramos-Goñi, J.M. & Mahtani-Chugani, V. & Perestelo-Pérez, L. & Posada-de la Paz, M., 2009. "Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias," Social Science & Medicine, Elsevier, vol. 69(6), pages 920-925, September.
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