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Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.

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Title: Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.
Authors: van Lonkhuizen PJC; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl.; Huntington Center Topaz Overduin, Katwijk, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl., Heemskerk AW; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; Huntington Center Topaz Overduin, Katwijk, The Netherlands., Slutter L; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands., van Duijn E; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; Huntington Center Topaz Overduin, Katwijk, The Netherlands., de Bot ST; Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands., Chavannes NH; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands., Meijer E; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands.
Corporate Authors: HEALTHE-RND consortium
Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Nov 29; Vol. 19 (1), pp. 444. Date of Electronic Publication: 2024 Nov 29.
Publication Type: Journal Article; Research Support, Non-U.S. Gov't
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: Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.
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  Data: <searchLink fieldCode="AU" term="%22van+Lonkhuizen+PJC%22">van Lonkhuizen PJC</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl.; Huntington Center Topaz Overduin, Katwijk, The Netherlands. p.j.c.van_lonkhuizen@lumc.nl.<br /><searchLink fieldCode="AU" term="%22Heemskerk+AW%22">Heemskerk AW</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; Huntington Center Topaz Overduin, Katwijk, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Slutter+L%22">Slutter L</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.<br /><searchLink fieldCode="AU" term="%22van+Duijn+E%22">van Duijn E</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; Huntington Center Topaz Overduin, Katwijk, The Netherlands.<br /><searchLink fieldCode="AU" term="%22de+Bot+ST%22">de Bot ST</searchLink>; Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Chavannes+NH%22">Chavannes NH</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands.<br /><searchLink fieldCode="AU" term="%22Meijer+E%22">Meijer E</searchLink>; Department of Public Health and Primary Care, Leiden University Medical Center, Postzone V0-P, PO Box 9600, 2300 RC, Leiden, The Netherlands.; National eHealth Living Lab, Leiden University Medical Center, Leiden, The Netherlands.
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  Data: <searchLink fieldCode="JN" term="%22101266602%22">Orphanet journal of rare diseases</searchLink> [Orphanet J Rare Dis] 2024 Nov 29; Vol. 19 (1), pp. 444. <i>Date of Electronic Publication: </i>2024 Nov 29.
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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: 2024 Nov 29
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