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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Bibliographic Details
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
Description
ISSN:1750-1172
DOI:10.1186/s13023-026-04299-1