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Expert Opinion on Orphan Drugs Volume 3, 2015 - Issue 7
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Original Research

Recruitment procedures for descriptive socio-economic studies in rare diseases. The BURQOL-RD project

Pedro Serrano-AguilarServicio de Evaluación, Servicio Canario de la Salud, Camino Candelaria 44, 38109 El Rosario, Santa Cruz de Tenerife, Spain;Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Spain;Centro de Investigaciones Biomédicas de Canarias (CIBICAN), Universidad La Laguna, Spain
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Renata LinertováServicio de Evaluación, Servicio Canario de la Salud, Camino Candelaria 44, 38109 El Rosario, Santa Cruz de Tenerife, Spain;Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Spain;Fundación Canaria de Investigación Sanitaria, Anexo al Hospital Universitario de Gran Canaria Dr. Negrin, C/Barranco de la Ballena s/n, 35010 Las Palmas de Gran Canaria, Spain+34 922 684 019; [email protected]
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Manuel Posada-de-la-PazResearch Institute for rare Diseases (IIER) & CIBERER, Instituto de Salud Carlos III, Sinesio Delgado, 6, 28029 Madrid, Spain
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Julio López-BastidaRed de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Spain;University of Castilla-La Mancha, Facultad de Terapia Ocupacional, Logopedia y Enfermería, Av. Real Fabrica de Seda s/n, 45600 Talavera de la Reina, Toledo, Spain
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Nerea González-HernándezRed de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Spain;Hospital Galdakao-Usansolo. Unidad de Investigación. B Labeaega, S/N, 48960 Galdakao, Spain
&
Domenica TaruscioNational Center for Rare Diseases, Istituto superiore di sanita (ISS), Viale Regina Elen 299, 00161 Rome, Italy
Pages 759-765 | Published online: 17 Jun 2015

Citations (7)

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Renata Linertová, Javier González-Guadarrama, Pedro Serrano-Aguilar, Manuel Posada-De-la-Paz, Márta Péntek, Georgi Iskrov & Marta Ballester. (2019) Schooling of Children with Rare Diseases and Disability in Europe. International Journal of Disability, Development and Education 66:4, pages 362-373.
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P. Serrano-Aguilar, M. M. Trujillo-Martin, T. del Pino-Sedeño, A. Pérez de la Rosa, A. M. de Pascual y Medina, L. Perestelo-Pérez, A. Toledo-Chávarri, M. Posada de la Paz & A. Sarría Santamera. (2016) Patient participation in the development of a clinical guideline for inherited retinal dystrophies. Expert Opinion on Orphan Drugs 4:7, pages 691-697.
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Articles from other publishers (5)

Richard Huan Xu, Shamay S M Ng, Nan Luo, Dong Dong & Shuyang Zhang. (2023) Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey. JMIR Public Health and Surveillance 9, pages e50147.
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Lidia García-Pérez, Renata Linertová, Cristina Valcárcel-Nazco, Manuel Posada, Inigo Gorostiza & Pedro Serrano-Aguilar. (2021) Cost-of-illness studies in rare diseases: a scoping review. Orphanet Journal of Rare Diseases 16:1.
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Cormac McCarthy, Beatriz Lara Gallego, Bruce C. Trapnell & Francis X. McCormack. 2017. Rare Diseases Epidemiology: Update and Overview. Rare Diseases Epidemiology: Update and Overview 419 442 .
Renata Linertová, Lidia García-Pérez & Iñigo Gorostiza. 2017. Rare Diseases Epidemiology: Update and Overview. Rare Diseases Epidemiology: Update and Overview 283 297 .
Julio López-Bastida, Juan Oliva-Moreno, Renata Linertová & Pedro Serrano-Aguilar. (2016) Social/economic costs and health-related quality of life in patients with rare diseases in Europe. The European Journal of Health Economics 17:S1, pages 1-5.
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