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Consensus recommendations for the treatment and management of patients with Fabry disease on migalastat : a modified Delphi study
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Bichet, Daniel G. (University of Montréal, Canada) ;
Hopkin, Robert J. (University of Cincinnati College of Medicine, United States) ;
Aguiar, Patrício (Lisbon University) ;
Allam, Sridhar R. (Texas Christian University, Fort Worth, United States) ;
Chien, Yin-Hsiu (National Taiwan University College of Medicine, Taipei, Taiwan) ;
Giugliani, Roberto (Postgraduate Program in Genetics and Molecular Biology (PPGBM) at Federal University of Rio Grande do Sul (UFRGS), Porto Alegre, Brazil) ;
Kallish, Staci (University of Pennsylvania, Philadelphia, United States) ;
Kineen, Sabina (Patient Advocate, United States) ;
Lidove, Olivier (French Network of Inherited Metabolic Disorders (G2m), France) ;
Niu, Dau-Ming (National Yang Ming Chiao Tung University, Taipei, Taiwan) ;
Olivotto, Iacopo (Meyer University Children's Hospital, Florence, Italy) ;
Politei, Juan (Fundacion Para el Estudio de Enfermedades Neurometabolicas (FESEN), Buenos Aires, Argentina) ;
Rakoski, Paul (Patient Advocate, United States) ;
Torra Balcells, Roser (Institut d'Investigació Biomèdica Sant Pau) ;
Tøndel, Camilla (University of Bergen, Norway) ;
Hughes, Derralynn A. (Royal Free London NHS Foundation Trust and University College London, United Kingdom) ;
Universitat Autònoma de Barcelona. Departament de Medicina
Fabry disease is a progressive disorder caused by deficiency of the α-galactosidase A enzyme (α-Gal A), leading to multisystemic organ damage with heterogenous clinical presentation. The addition of the oral chaperone therapy migalastat to the available treatment options for Fabry disease is not yet universally reflected in all treatment guidelines. [...]
2023 -  10.3389/fmed.2023.1220637
Frontiers in Medicine, Vol. 10 (september 2023)
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29 p, 1.2 MB |
Implementing living evidence to inform health decisions : A strategy for building capacity in health sector (Protocol)
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Rojas-Reyes, Maria Ximena (Institut d'Investigació Biomèdica Sant Pau) ;
Urrútia, Gerard (Institut d'Investigació Biomèdica Sant Pau) ;
Rada, Gabriel (Epistemonikos Foundation) ;
Alonso, Pablo (Consorcio de Investigacion Biomedica en Red de Epidemiología y Salud Publica (CIBERESP)) ;
Rigau, David (Institut d'Investigació Biomèdica Sant Pau) ;
Auladell-Rispau, Ariadna (Hospital de la Santa Creu i Sant Pau (Barcelona, Catalunya)) ;
Universitat Autònoma de Barcelona
Every day important healthcare decisions are made with incomplete or outdated information about the effects of the healthcare interventions available, what delivers the best value for the health system and where more research is needed. [...]
2022 - 10.12688/openreseurope.14041.2
Open Research Europe, Vol. 1 (2022) , p. 114
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13 p, 120.2 KB |
Navigating the pandemic : gendered perspectives on vulnerability, resilience and institutional change in times of crisis
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López Belloso, María (University of Deusto) ;
Strid, Sofia (University of Gothenburg)
The COVID-19 pandemic has been a multifaceted crisis, impacting health, the economy, policy and society at large, and also resulting in a humanitarian crisis. These crises have impacted everyone, although the effects have been unevenly distributed, leading to further disadvantage and marginalisation for those who were already vulnerable and marginalised. [...]
La pandèmia de COVID-19 ha estat una crisi multifacètica que ha impactat en la salut, l'economia, les polítiques públiques i la societat en general, i que també ha provocat una crisi humanitària. [...]
La pandemia de COVID-19 ha sido una crisis multifacética que ha impactado en la salud, la economía, las políticas públicas y la sociedad en general, y que también ha provocado una crisis humanitaria. [...]
2023 - 10.5565/rev/papers.3243
Papers : revista de sociologia, Vol. 108 Núm. 3 (2023) , p. e3243 (Artículos de monográfico)
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5 p, 336.0 KB |
Does attendance at the ECTRIMS congress impact on therapeutic decisions in multiple sclerosis care?
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Saposnik, Gustavo (University of Zurich) ;
Maurino, Jorge (University of Buenos Aires) ;
Sempere, Angel P. (Hospital General Universitario de Alicante (Alacant, País Valencià)) ;
Terzaghi, Maria A. (St. Michael's Hospital, Toronto) ;
Amato, Maria Pia (University of Florence) ;
Montalban, Xavier (Hospital Universitari Vall d'Hebron) ;
Universitat Autònoma de Barcelona.
Departament de Medicina
Conferences traditionally play an important role in the ongoing medical education of healthcare professionals. We assessed the influence of attending the ECTRIMS congress on therapeutic decision-making in multiple sclerosis (MS) care. [...]
2019 - 10.1177/2055217319835226
Multiple Sclerosis Journal - Experimental, Translational and Clinical, Vol. 5 Núm. 1 (1-3 2019) , p. 205521731983522
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9 p, 1.6 MB |
Comparative Effectiveness Research in Localized Prostate Cancer : A 10-Year Follow-up Cohort Study
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Garin, Olatz (Universitat Pompeu Fabra) ;
Suárez, J.F. (Hospital Universitari de Bellvitge) ;
Guedea, F. (Institut Català d'Oncologia) ;
Pont, À. (Centro de Investigación Biomédica en Red de Epidemiología y Salud Pública) ;
Pardo Cladellas, Yolanda (Universitat Autònoma de Barcelona) ;
Goñi, A. (Institutu Onkologikoa) ;
Mariño, Alfonso (Servicio de Oncología Radioterápica. Centro Oncológico de Galicia) ;
Hervás, A. (Hospital Universitario Ramón y Cajal (Madrid)) ;
Herruzo, I. (Hospital Regional Universitario Carlos Haya (Málaga)) ;
Cabrera, Patricia (Hospital Universitario Virgen del Rocío (Sevilla, Andalusia)) ;
Sancho-Pardo, Gemma (Institut d'Investigació Biomèdica Sant Pau) ;
Ponce de León Roca, Javier (Institut d'Investigació Biomèdica Sant Pau) ;
Macías Hernández, Víctor (Hospital Universitari i Politècnic La Fe (València)) ;
Gutierrez, Cristina (Institut Català d'Oncologia) ;
Castells, Manel (Hospital Universitari de Bellvitge) ;
Ferrer, M. (Universitat Autònoma de Barcelona)
Purpose: Long-term comparative effectiveness research on localized prostate cancer treatments is scarce, and evidence is lacking especially for brachytherapy. The aim of this study was to assess the long-term impact of the side effects of radical prostatectomy, brachytherapy, and external radiation therapy on patients with localized prostate cancer at 10 years, using propensity score analyses. [...]
2021 - 10.1016/j.ijrobp.2020.12.032
International Journal of Radiation Oncology Biology Physics, Vol. 110 Núm. 3 (january 2021) , p. 718-726
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Comportamiento de voto y nivel de disenso de España en el Consejo de la Unión Europea (2009-2019)
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Arregui, Javier (Universitat Pompeu Fabra) ;
Bezzina, Guillermo (Barcelona Center for European Studies)
El presente artículo analiza el comportamiento de voto de España y de otros Estados miembros en el Consejo de la UE. La investigación se centra en examinar el nivel de disenso que existe en el voto que los Estados miembros emiten al final del proceso de toma de decisiones. [...]
Aquest article analitza el comportament de vot d'Espanya i d'altres Estats membres al Consell de la UE. La investigació se centra a examinar el nivell de dissens que hi ha en el vot que els Estats membres emeten al final del procés de presa de decisions. [...]
This article analyzes the voting behavior of Spain and other Member States in the Council of the EU. The research focuses on examining the level of dissent that exists in the vote that Member states cast at the end of the decision-making process. [...]
2022 - 10.5565/rev/quadernsiee.17
Quaderns IEE, Vol. 1 Núm. 1 (2022) , p. 4-26 (Estudis)
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Assessment of implicit interests through an unobtrusive computer task. Their relations with career decision, anxiety, and personality traits
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Castelló i Tarrida, Antoni (Universitat Autònoma de Barcelona. Departament de Psicologia Bàsica, Evolutiva i de l'Educació) ;
Cladellas, Ramon (Universitat Autònoma de Barcelona. Departament de Psicologia Bàsica, Evolutiva i de l'Educació)
Adolescence is a period where youngsters still do not know much about themselves. That makes some decisions, like those concerning vocational elections, a complicated issue that has important consequences for their life. [...]
2021 - 10.3390/ijerph182312366
International journal of environmental research and public health, Vol. 18 Núm. 23 (12-1 2021) , p. 12366
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