Development and validation of the first needs-based quality of life measure for individuals with manifest Huntington's disease.

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Title: Development and validation of the first needs-based quality of life measure for individuals with manifest Huntington's disease.
Authors: Spray I; Galen Research, Manchester, UK., Grzeda MT; Galen Research, Manchester, UK., Thorpe J; Galen Research, Manchester, UK., Johnstone E; Galen Research, Manchester, UK., Hannemann W; Department of Neurology, University Hospital Ulm, University Ulm, Ulm, Germany., Squitieri F; Unità Huntington E Malattie Rare Fondazione IRCCS Casa Sollievo Della Sofferenza Hospital, San Giovanni Rotondo, Italy., Giancaterino G; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy., Mina PE; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy., D'Alessio B; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy., Arnesen A; European Huntington Association, Kristiansand, Norway., Klempíř J; Department of Neurology and Centre of Clinical Neuroscience, General University Hospital and First Faculty of Medicine, Charles University, Prague, Czech Republic., Ulmanová O; Department of Neurology and Centre of Clinical Neuroscience, General University Hospital and First Faculty of Medicine, Charles University, Prague, Czech Republic., van Lonkhuizen P; Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.; National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands.; Huntington Center Topaz Overduin, Katwijk, Netherlands., Heemskerk AW; Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.; Huntington Center Topaz Overduin, Katwijk, Netherlands., Hoblyn J; Trinity College Dublin, Dublin, Ireland.; John of God University Hospital, Dublin, Ireland., O'Malley E; Trinity College Dublin, Dublin, Ireland., Moldovan R; Division of Evolution, Infection and Genomics, School of Biological Sciences, University of Manchester, Manchester, UK.; Manchester Centre for Genomic Medicine, St. Mary's Hospital, Manchester University NHS Foundation Trust, Manchester, UK.; Department of Psychology, Babeș-Bolyai University, Cluj-Napoca-Napoca, Romania., Landwehrmeyer GB; Department of Neurology, University Hospital Ulm, University Ulm, Ulm, Germany., McKenna SP; Galen Research, Manchester, UK., Mühlbäck A; Department of Neurology, University Hospital Ulm, University Ulm, Ulm, Germany. alzbeta.muehlbaeck@uni-ulm.de.; Department of Neurology and Centre of Clinical Neuroscience, General University Hospital and First Faculty of Medicine, Charles University, Prague, Czech Republic. alzbeta.muehlbaeck@uni-ulm.de.; Huntington-Zentrum Süd, kbo Isar-Amper-Klinikum, Taufkirchen, Germany. alzbeta.muehlbaeck@uni-ulm.de.
Corporate Authors: HEALTHE-RND consortium
Source: Journal of neurology [J Neurol] 2026 Jun 11; Vol. 273 (7). Date of Electronic Publication: 2026 Jun 11.
Publication Type: Journal Article; Validation Study
Journal Info: Publisher: Springer-Verlag Country of Publication: Germany NLM ID: 0423161 Publication Model: Electronic Cited Medium: Internet ISSN: 1432-1459 (Electronic) Linking ISSN: 03405354 NLM ISO Abbreviation: J Neurol Subsets: MEDLINE
Database: MEDLINE Ultimate
Description
ISSN:1432-1459
DOI:10.1007/s00415-026-13898-8