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. |
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| 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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| ISSN: | 1750-1172 |
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| DOI: | 10.1186/s13023-024-03461-x |
