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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
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PubType: Academic Journal
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  Data: Development and validation of the first needs-based quality of life measure for individuals with manifest Huntington's disease.
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  Data: <searchLink fieldCode="AU" term="%22Spray+I%22">Spray I</searchLink>; Galen Research, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Grzeda+MT%22">Grzeda MT</searchLink>; Galen Research, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Thorpe+J%22">Thorpe J</searchLink>; Galen Research, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Johnstone+E%22">Johnstone E</searchLink>; Galen Research, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Hannemann+W%22">Hannemann W</searchLink>; Department of Neurology, University Hospital Ulm, University Ulm, Ulm, Germany.<br /><searchLink fieldCode="AU" term="%22Squitieri+F%22">Squitieri F</searchLink>; Unità Huntington E Malattie Rare Fondazione IRCCS Casa Sollievo Della Sofferenza Hospital, San Giovanni Rotondo, Italy.<br /><searchLink fieldCode="AU" term="%22Giancaterino+G%22">Giancaterino G</searchLink>; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy.<br /><searchLink fieldCode="AU" term="%22Mina+PE%22">Mina PE</searchLink>; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy.<br /><searchLink fieldCode="AU" term="%22D'Alessio+B%22">D'Alessio B</searchLink>; Qrare Medical Centre, Fondazione Lega Italiana Ricerca Huntington (LIRH), Rome, Italy.<br /><searchLink fieldCode="AU" term="%22Arnesen+A%22">Arnesen A</searchLink>; European Huntington Association, Kristiansand, Norway.<br /><searchLink fieldCode="AU" term="%22Klempíř+J%22">Klempíř J</searchLink>; Department of Neurology and Centre of Clinical Neuroscience, General University Hospital and First Faculty of Medicine, Charles University, Prague, Czech Republic.<br /><searchLink fieldCode="AU" term="%22Ulmanová+O%22">Ulmanová O</searchLink>; Department of Neurology and Centre of Clinical Neuroscience, General University Hospital and First Faculty of Medicine, Charles University, Prague, Czech Republic.<br /><searchLink fieldCode="AU" term="%22van+Lonkhuizen+P%22">van Lonkhuizen P</searchLink>; 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.<br /><searchLink fieldCode="AU" term="%22Heemskerk+AW%22">Heemskerk AW</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands.; Huntington Center Topaz Overduin, Katwijk, Netherlands.<br /><searchLink fieldCode="AU" term="%22Hoblyn+J%22">Hoblyn J</searchLink>; Trinity College Dublin, Dublin, Ireland.; John of God University Hospital, Dublin, Ireland.<br /><searchLink fieldCode="AU" term="%22O'Malley+E%22">O'Malley E</searchLink>; Trinity College Dublin, Dublin, Ireland.<br /><searchLink fieldCode="AU" term="%22Moldovan+R%22">Moldovan R</searchLink>; 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.<br /><searchLink fieldCode="AU" term="%22Landwehrmeyer+GB%22">Landwehrmeyer GB</searchLink>; Department of Neurology, University Hospital Ulm, University Ulm, Ulm, Germany.<br /><searchLink fieldCode="AU" term="%22McKenna+SP%22">McKenna SP</searchLink>; Galen Research, Manchester, UK.<br /><searchLink fieldCode="AU" term="%22Mühlbäck+A%22">Mühlbäck A</searchLink>; 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.
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  Data: <searchLink fieldCode="JN" term="%220423161%22">Journal of neurology</searchLink> [J Neurol] 2026 Jun 11; Vol. 273 (7). <i>Date of Electronic Publication: </i>2026 Jun 11.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22Springer-Verlag%22">Springer-Verlag </searchLink><i>Country of Publication: </i>Germany <i>NLM ID: </i>0423161 <i>Publication Model: </i>Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1432-1459 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2203405354%22">03405354 </searchLink><i>NLM ISO Abbreviation: </i>J Neurol <i>Subsets: </i>MEDLINE
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              Text: 2026 Jun 11
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