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Health-related quality of life in adults with epidermolysis bullosa: a cross-sectional study in seven European countries using EQ-5D-5L.

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Title: Health-related quality of life in adults with epidermolysis bullosa: a cross-sectional study in seven European countries using EQ-5D-5L.
Authors: Linertová R; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain. renata.linertova@sescs.es.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain. renata.linertova@sescs.es., Péntek M; Health Economics Research Center (HECON), University Research and Innovation Center, Obuda University, Budapest, Hungary.; Doctoral School of Innovation Management, Obuda University, Budapest, Hungary., Rodríguez-Díaz B; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain., Bodemer C; Pediatric Dermatology Department and National Expert Centre for Genodermatoses (MAGEC-Necker), Necker Enfants Malades Hospital, APHP, University Paris Cité, Paris, France., Hübl V; Department of Dermatology, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg, Germany., El Hachem M; Dermatology Unit and Genodermatosis Research Unit, Translational Paediatrics and Clinical Genetics Research Area, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy., Salamon G; HEALTH Lab | Competence Center for Medical and Health Psychology, Sigmund Freud University, Vienna, Austria., Alonso-Ferreira V; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain.; Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III, Madrid, Spain., Stefanov G; Bulgarian Association of Promotion of Education and Science (BAPES), Institute for Rare Diseases, Plovdiv, Bulgaria.; Department of Social Medicine and Health Management, Faculty of Public Health Medical University, Pleven, Bulgaria., Jain R; DEBRA International, Vienna, Austria.; Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore., Ramallo-Fariña Y; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain., García-Pérez L; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain.
Corporate Authors: BUR-EB Study Group
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2026 Mar 19; Vol. 21 (1). Date of Electronic Publication: 2026 Mar 19.
Publication Type: Journal Article
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: Health-related quality of life in adults with epidermolysis bullosa: a cross-sectional study in seven European countries using EQ-5D-5L.
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  Data: <searchLink fieldCode="AU" term="%22Linertová+R%22">Linertová R</searchLink>; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain. renata.linertova@sescs.es.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain. renata.linertova@sescs.es.<br /><searchLink fieldCode="AU" term="%22Péntek+M%22">Péntek M</searchLink>; Health Economics Research Center (HECON), University Research and Innovation Center, Obuda University, Budapest, Hungary.; Doctoral School of Innovation Management, Obuda University, Budapest, Hungary.<br /><searchLink fieldCode="AU" term="%22Rodríguez-Díaz+B%22">Rodríguez-Díaz B</searchLink>; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain.<br /><searchLink fieldCode="AU" term="%22Bodemer+C%22">Bodemer C</searchLink>; Pediatric Dermatology Department and National Expert Centre for Genodermatoses (MAGEC-Necker), Necker Enfants Malades Hospital, APHP, University Paris Cité, Paris, France.<br /><searchLink fieldCode="AU" term="%22Hübl+V%22">Hübl V</searchLink>; Department of Dermatology, Medical Center, Faculty of Medicine, University of Freiburg, Freiburg, Germany.<br /><searchLink fieldCode="AU" term="%22El+Hachem+M%22">El Hachem M</searchLink>; Dermatology Unit and Genodermatosis Research Unit, Translational Paediatrics and Clinical Genetics Research Area, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.<br /><searchLink fieldCode="AU" term="%22Salamon+G%22">Salamon G</searchLink>; HEALTH Lab | Competence Center for Medical and Health Psychology, Sigmund Freud University, Vienna, Austria.<br /><searchLink fieldCode="AU" term="%22Alonso-Ferreira+V%22">Alonso-Ferreira V</searchLink>; Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), Madrid, Spain.; Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III, Madrid, Spain.<br /><searchLink fieldCode="AU" term="%22Stefanov+G%22">Stefanov G</searchLink>; Bulgarian Association of Promotion of Education and Science (BAPES), Institute for Rare Diseases, Plovdiv, Bulgaria.; Department of Social Medicine and Health Management, Faculty of Public Health Medical University, Pleven, Bulgaria.<br /><searchLink fieldCode="AU" term="%22Jain+R%22">Jain R</searchLink>; DEBRA International, Vienna, Austria.; Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore.<br /><searchLink fieldCode="AU" term="%22Ramallo-Fariña+Y%22">Ramallo-Fariña Y</searchLink>; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain.<br /><searchLink fieldCode="AU" term="%22García-Pérez+L%22">García-Pérez L</searchLink>; Fundación Canaria Instituto de Investigación Sanitaria de Canarias (FIISC), Santa Cruz de Tenerife, Spain.; Network for Research on Chronicity Primary Care and Health Promotion (RICAPPS), Tenerife, Spain.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2026 Mar 19; Vol. 21 (1). <i>Date of Electronic Publication: </i>2026 Mar 19.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22BioMed+Central%22">BioMed Central </searchLink><i>Country of Publication: </i>England <i>NLM ID: </i>101266602 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1750-1172 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2217501172%22">17501172 </searchLink><i>NLM ISO Abbreviation: </i>Orphanet J Rare Dis <i>Subsets: </i>MEDLINE
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        Text: English
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      – TitleFull: Health-related quality of life in adults with epidermolysis bullosa: a cross-sectional study in seven European countries using EQ-5D-5L.
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              Text: 2026 Mar 19
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