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

Author

Listed:
  • 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

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.

Suggested Citation

  • Linertová, Renata & Serrano-Aguilar, Pedro & Posada-de-la-Paz, Manuel & Hens-Pérez, Manuel & Kanavos, Panos & Taruscio, Domenica & Schieppati, Arrigo & Stefanov, Rumen & Péntek, Márta & Delgado, Claud, 2012. "Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study," Health Policy, Elsevier, vol. 108(1), pages 19-26.
    • 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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    References listed on IDEAS

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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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    Cited by:

    1. Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Manuel Posada-de-la-Paz & Pedro Serrano-Aguilar & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Petra Baji & Clau, 2016. "Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 99-108, April.
    2. Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Márta Péntek & Cl, 2016. "Social/economic costs and health-related quality of life in patients with scleroderma in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 109-117, April.
    3. Georgi Iskrov & Itziar Astigarraga & Rumen Stefanov & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Paz & Arrigo Schieppati & Domenica Tarusc, 2016. "Social/economic costs and health-related quality of life in patients with histiocytosis in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 67-78, April.
    4. Angelis, Aris & Tordrup, David & Kanavos, Panos, 2015. "Socio-economic burden of rare diseases: A systematic review of cost of illness evidence," Health Policy, Elsevier, vol. 119(7), pages 964-979.
    5. Márta Péntek & László Gulácsi & Valentin Brodszky & Petra Baji & Imre Boncz & Gábor Pogány & Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Pedro Serrano-Aguilar & Manuel Posada-de-la-Pa, 2016. "Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 89-98, April.
    6. Patrizio Armeni & Marianna Cavazza & Entela Xoxi & Domenica Taruscio & Yllka Kodra, 2021. "Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal," IJERPH, MDPI, vol. 18(3), pages 1-18, January.

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